May 27, 2024 • 65 mins
Join us on a journey to Sweden, where we met with our expert guest from Paris. When chronic illness burdens a family, where do they find strength and guidance? Caitlin Dwyer, drawing from her professional experience at the Children's Hospital of Philadelphia and her personal battle with her parent's cancer, joins us to explore the intricate world of caregiving. Her stories illuminate the resilience within caregivers and those enduring chronic illness.
In this episode, we delve into the challenging realities of caring for a child with a relentless illness, making difficult decisions for terminally ill parents, and the often-unseen struggles of caregivers themselves. Caitlin's personal narrative, intertwined with her professional insights, emphasizes the critical need for caregiver support. She underscores the importance of self-compassion, coping skills, and robust support systems, shedding light on the emotional journey often overshadowed by the physical demands of caregiving.
Our heartfelt conversation concludes with valuable lessons on setting boundaries and self-care strategies to prevent caregiver burnout. Caitlin's transition from therapist to coach empowers women balancing careers and caregiving responsibilities, offering strategies for achieving a balanced life. This episode is a powerful reminder: within the shared wisdom of our experiences, we find solace and strength, knowing we are never alone.
Don't miss this episode—it's a beacon of hope and practical advice for anyone touched by the caregiving journey.
Caitlin Dwyer Coaching | Coaching for Caregivers
Homepage - Caitlin Dwyer Therapy
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Picture this You're standing at a crossroads, faced
with unexpected challenges thatreshape your life's journey.
Whether you've experienced itfirsthand or not, the path of
living with chronic illness orbecoming a caregiver for someone
is a transformative one, filledwith moments of profound
resilience and heart-wrenchingvulnerability.
Let's just say this personalexperience isn't on your life
(00:29):
bingo card.
If it isn't, why should youtune in?
Well, because the lessonslearned from the journey through
chronic illness and caregivingtouch on the core of human
experience, revealing deeptruths about resilience, empathy
and the indomitable humanspirit.
Caregiver, someone affected bychronic illness or simply a
(01:06):
curious listener.
This episode promises to offervaluable insights and a deeper
understanding of the humancondition.
In today's episode, we inviteyou to walk this path with us,
as we uncover the hidden storiesand powerful lessons from those
who navigate these challenginglandscapes daily.
Join us for an enlighteningconversation with Caitlin Dwyer,
clinical social worker, aseasoned therapist and a
(01:28):
visionary coach in the realm ofchronic illness and caregiving.
Caitlin's journey began in thebustling emergency room of the
world-renowned Children'sHospital of Philadelphia, where
she provided crisis interventionand support in the emergency
room and nephrology unit forchildren awaiting life-saving
organ transplants, oftenreceiving dialysis within the
(01:53):
first few months months of life.
Her career has been a tapestrywoven with threads of empathy,
strength and profound insight,particularly as she's faced
personal losses and the globalupheaval of COVID-19.
In addition to her professionaljourney, keelan brings a deeply
personal understanding ofcaregiving to our discussion.
(02:15):
Having navigated multiple boutsof cancer within her own family
, she intimately understands theemotional and logistical
challenges that accompanycaregiving for loved ones with
chronic illnesses.
This firsthand experience hasimbued her with a profound sense
of empathy, resilience andwisdom, enriching her ability to
support others on their owncaregiving journeys.
(02:37):
Caitlin will share her uniqueinsights on essential skill sets
for navigating the challengesof living with chronic illness
and those that do the caregiving.
So tread carefully with us aswe explore these profound
experiences, recognize thestrength and vulnerability and
discover that, while the journeyis unique for everyone, the
destination of well-being is ashared horizon Well before we
(03:03):
get started.
This episode is still beingbrought to you by the Recovery
Collective in Annapolis,maryland.
However, we are recording inStockholm, sweden, well, caitlin
, we have been listened to by 60plus different countries, and
Sweden being one of them, and wecome from Annapolis and,
caitlin, you come from Paris.
(03:24):
So we are traveling from afarand we're glad to do so.
So thanks for so much forjoining us in Sweden.
Speaker 2 (03:31):
Thank you so much for having me.
Speaker 1 (03:33):
And certainly part of our purpose and our drive is to
provide a collective solutionto health and wellness, and I've
realized that Sweden is doingthat for its residents.
So I'll give you and some ofthe listeners some stats that
Sweden was named the bestcountry for mental health in
2023 and in 2024 retains thattop spot.
(03:57):
So here's some of thestatistics, since we're a
podcast about health andwellness.
The percentage of people in thecountry who work long hours is
less than 1%.
Wow, that's not very American,is it?
Speaker 2 (04:10):
That is not very American at all.
Speaker 1 (04:12):
What's considered long hours?
50 hours plus.
So less than 1% of populationworks less than 50 hours.
Another statistic that they say, man, it's great for mental
health.
The average number of hourspeople have in the day to devote
to sleep, leisure and personaltime is over 15 hours every day.
Speaker 2 (04:31):
Wow.
Speaker 1 (04:32):
Yeah, that's incredible.
So it's not the eight, eightand eight.
Speaker 2 (04:36):
I guess yeah.
Speaker 1 (04:38):
That's ideal, and maybe they actually hit that
ideal.
I don't know, wow yeah,actually hit that ideal.
I don't know, wow yeah, and Ithink we've been here a couple
of days now and just noticingwe're here during the week and
the work week and just peopleoutside, and whether it's the
lunch hour or taking walks andenjoying the granted, it's a
beautiful spring here in Sweden.
It's been gorgeous, lovely andnot humid, and I think the birds
(05:01):
are happier too.
Speaker 2 (05:03):
They sound happier.
And you can't forget Fika.
Speaker 1 (05:05):
Fika.
So Fika here is, I guess, acultural term, where you take
time throughout the day, oftenbefore lunch or in the afternoon
before dinner, where you sitdown, enjoy a warm drink, some
tasty pastries and justsocialize with your coworkers or
neighbors.
Yeah, I've loved Fika.
Speaker 2 (05:25):
It's incredible and it's so normalized, like it
doesn't feel out of place inthis culture, like they
incorporate that so naturallyand it helps it, of course,
contributes to their mentalhealth.
Speaker 1 (05:37):
Oh, my goodness, are we talking to a teacher?
Here in Sweden and they have abuilt-in time slot for the
teachers to take FICA, usuallyaround 10 am, and it's not to do
the lesson planning, but no,they actually get together and
have a warm drink and peoplebring homemade pastries and
apple pies at 10 am.
That's wonderful and they'vedone it on Tuesdays and they did
(05:59):
FICA Friday and I want to bringthat back.
Speaker 2 (06:04):
How hard do you think that would?
Speaker 1 (06:05):
be to do in America.
It's worth a try.
Hey, we like change the culturein a good way.
Speaker 2 (06:11):
Absolutely.
Speaker 1 (06:12):
So another thing the total area of designated green
spaces within the country is sovery high and even in the city
there's so many just gardens andwalking paths and bicyclists
and places to sit down outsideto eat your lunch and enjoy the
outside, and we've certainlyenjoyed that absolutely, and we
(06:32):
were talking earlier just abouthow clean the air feels and
smells, and just even for a city, absolutely, it's so wild it's,
yeah, not the norm us.
They're very big on theirreducing emissions and things
like that, and Sweden even hasover 95,700 lakes.
Oh my gosh, I didn't know it wasthat lake heavy, but Stockholm
(06:55):
is a city of lakes, isn't it itreally?
Is Little islands and lakes.
Yeah, it's been awesome.
And lastly, the percentage ofgovernment health care
expenditure dedicated to mentalhealth is one of the highest
shares of government spending inall the world.
So they're not just reactive tomental health, but they're
trying to prevent the onset ofmental health disorders as well,
(07:17):
and includes investing heavilyin resources and services for
people.
It's pretty cool.
Speaker 2 (07:23):
It's really cool.
It's certainly a model weshould all be looking to.
Speaker 1 (07:26):
Absolutely, from Paris to the States, come to
Sweden.
Thanks for traveling here andmeeting us.
Speaker 2 (07:33):
Absolutely.
Again, thanks for having me.
Well, let's jump into it.
Speaker 1 (07:37):
Let's talk about your early history working at CHOP.
Speaker 2 (07:40):
And CHOP stands for.
So CHOP stands for Children'sHospital of Philadelphia.
So I actually started at CHOPas an intern and I worked in the
emergency room and shortlyafter my graduation I was hired
and worked in the emergency roomand then I also joined the
nephrology department.
So between those twoexperiences I was really exposed
(08:00):
to so many different stories ofillness, both acute and chronic
, and not just the patient'sexperience but also how that
experience is shared with thefamily.
Yeah, so CHOP stands forChildren's Hospital of
Philadelphia and it is arenowned research and clinical
center which specializes in somany unique chronic illnesses,
(08:26):
really innovative in their care.
And working in the nephrologydepartment, which nephrology is
all about taking care of thekidneys, it was really exciting
to see how we were able to helpkids with really serious, really
serious chronic illness.
Speaker 1 (08:48):
So you're working with kids that, like I said,
with just a few months old, thatneed kidney transplants and or
on dialysis.
So, as a social worker, I'msure your role involved a lot of
worried and stressfulcaregivers and family members
and parents.
(09:08):
And tell us a little bit aboutthat.
Speaker 2 (09:10):
I do have my social work license and my role as a
medical social worker initiallywas far less therapy focused A
social worker in the medicalsetting, particularly in
pediatrics.
There's case management, thereis psychosocial assessments and
providing kind of likeon-the-spot therapy, because the
(09:31):
age range of our patients couldbe as young as newborns all the
way up to older adolescents.
I built rapport with thechildren, I built rapport with
the family and tried to helpsupport them navigating this
really life-disruptingexperience.
Speaker 1 (09:50):
You say life-disrupting.
I often call it the parent'snightmare.
Speaker 2 (09:54):
Yeah, and I had plenty of parents use that word
many, many times.
It was so jarring, so trulylife-changing, so much grief
associated with with some ofthese diagnoses.
There was certainly a spectrumof acuity.
(10:14):
There were many kids who Iwould eventually see in my
particular role.
I worked in the dialysis unit.
Primarily these are childrenwho no longer have working
kidneys and need to have amachine do the job of the
kidneys.
There's a couple different typesof dialysis.
There's a type that you do athome every day.
There is a type that you haveto come to CHOP and do three to
(10:36):
four times a week and this isall.
While you wait for a kidneytransplant, you have to keep
doing dialysis until that kidneytransplant occurs.
And so you can imagine ifyou're doing dialysis at home
every night, the parents aredoing that.
Your home becomes a medicalcenter.
Rooms are transformed, they'refilled with equipment, supplies.
(10:59):
Overnight, your child'sattached to a machine where
alarms are going off, wherethere could be emergencies.
If you're doing it in center,your parents who are trying to
get their kid to a hospital thatcould be up to two to three
hours away, because pediatricdialysis is super duper rare.
Not just every hospital hasthat, so the toll of this
(11:23):
caregiving was prettysubstantial.
Speaker 1 (11:27):
Talk more about, and you said the word grief.
If you're not going throughthis, I wonder if that gets lost
in some people that can'tempathize or relate to that.
What do you mean by this griefexperience for the caregivers?
Speaker 2 (11:40):
Yeah, you know, it's really heartbreaking when,
especially as a parent, you havethis beautiful child.
You have all of these hopes anddreams.
You're imagining what it'sgoing to be like growing up, or
seeing your child grow up, andthen you get a diagnosis like
this and all of a sudden, thosehopes and dreams change.
(12:02):
They could be completelyobliterated.
And dreams change, they couldbe completely obliterated.
And so there is this griefabout a loss of normalcy, a
grief around what your childwill be able to do, not be able
to do, perhaps grief around evenlife expectancy.
Sure.
Speaker 1 (12:22):
Yeah at minimal, having what we thought would be
normal and going into a newnormalcy the way you explained
that.
That's a grief period.
Speaker 2 (12:30):
It's absolutely a grief period and that was
something that I reallyencouraged and I have to say our
entire medical team was reallygood at doing this, really
encouraging parents to processthat, like we really did all
recognize.
We know this is not what youthought this was gonna be, In
fact we know that this isn't howit should be, but this is what
(12:53):
it is.
This is really awful.
Let's try to work through this.
And our hospital, I think, wasexceptional at providing that
psychosocial facet of care tohelp honor just the intensity
and significance of that toll.
Speaker 1 (13:13):
Yeah, and we as clinical social workers know how
important that is for changeand transition and coping with
that new change.
Yeah, that's big.
That sounded like a stressfulwork environment you were in.
Speaker 2 (13:29):
It's a very stressful work environment.
Speaker 1 (13:31):
You should see her face.
Speaker 2 (13:33):
There's a reason I'm not in that environment anymore.
Speaker 1 (13:37):
So you did quite the service work, social work.
For how many years were you atCHOP?
So I was a medical?
Speaker 2 (13:43):
yeah, I was a medical social worker, Gosh.
I was a medical social workerat CHOP for about 10 years and
during that time, about five,six years into my time there, I
got my license, my clinicallicense.
So I became a licensed clinicalsocial worker, which, in
(14:04):
Pennsylvania, that gave me theopportunity to open a private
practice and I began to seeclients in a private practice
therapeutic setting, which was abit of crisis management
education.
How else would you explain?
Speaker 1 (14:19):
those very viable skills that you were helping
caregivers with.
Speaker 2 (14:33):
Yeah, I would say in um at CHOP, it was a lot of
education, a lot of crisismanagement, a lot of immediate
problem solving, a lot ofsolution focused work like, okay
, you can't access thesemedications, you can't access
this medical care, you can'taccess these supports how can we
(14:54):
figure out a way of gettingthat?
A lot of liaising between thehospital or the medical team in
schools, with children and youthservices li Liaising was a big
part as well.
Speaker 1 (15:06):
And with this example , you're showing how this type
of chronic illness islife-changing, not just for the
client experiencing this chronicillness, but the caregivers.
Speaker 2 (15:20):
Yes, yes, tremendously life-changing.
I recall some parents having tomake really hard decisions
should one of the parents end upresigning from their job
because someone was going tohave to bring their child go to
a medical treatment bythemselves.
Certainly, many parents had toallow their child to come to
(15:51):
treatments by themselves becausemaybe they weren't in a
position where they could notwork anymore.
Yeah, so there was a toll oncaregiving from a logistical
standpoint, in terms of jobs, interms of transportation costs,
in terms of jobs in terms oftransportation costs.
A really distressing challengefor these caregivers were also
that for many of these families,the patient, the child who was
(16:15):
getting dialysis, was not theironly child.
Yes, and so we don't talk toomuch about how the siblings Are
affected.
Yeah, and we talk about itwithin pediatric healthcare,
which is great.
I mean we have this isn't justat CHOP, but in other pediatric
hospitals.
We have incredibleprofessionals called child life
(16:36):
specialists and at CHOP didgreat things.
They partnered with social worka lot and doing like sibling
supports to help offer a placefor siblings.
But back to challenges for thecaregivers.
Think about being a parenthaving to feel like you're
choosing between which child isgetting your attention.
(16:57):
I recall one situation wherethere was a family and a family
with a coupled parent, withcoupled parents, multiple
children and one of the siblingsof the patient won a tournament
or was going to a tournament.
That was out of state, but thepatient needed dialysis, and I
(17:21):
mentioned earlier that pediatricdialysis is not something you
can just find anywhere, so wehave to figure that out.
So that was something I wouldoften do, trying to coordinate
dialysis care for our patientsout of state, and where this
tournament for the sibling was,there was no pediatric dialysis
available, and so what ended uphappening was one of the parents
(17:42):
had to decide not to watchtheir other child at this
tournament.
Speaker 1 (17:48):
Yeah, I think Jennifer and I, we often see
those clients.
They are the sibling of someonewith, whether it be special
needs or chronic illness, andthere's no such thing as balance
when it comes to being afull-time caregiver.
Speaker 2 (18:06):
Yeah.
Speaker 1 (18:06):
So the 50-50 balance?
I mean it's hard to get that inany aspect of life, let alone
the bonding patterns or role asa caregiver and parent.
And sometimes, what would yousay, the children often get or
feel lost because of the triageor priority.
Speaker 2 (18:26):
Absolutely and also guilt because, a lot of siblings
are aware of why their sicksibling is getting all the
attention they're able tocognitively recognize or just
like logically recognize, likewell, of course my parents need
to help my sibling Look at howsick they are.
But they're going to naturallyfeel frustrated, maybe minimized
(18:46):
, maybe hurt, disappointed.
But then they feel guiltybecause they're like well,
shouldn't they be with my?
Speaker 1 (18:52):
sibling.
Speaker 2 (18:53):
Why am I feeling this way?
So yeah, I imagine that whenyou talk about your clients,
there are so many layers, somany complex.
Speaker 1 (19:02):
you know teasing apart desires, so many complex,
you know, teasing aparts and youkind of explained that internal
dialogue, trying to determinewhat is healthy, what's
empowering the guilt, like yousaid, and then becoming that
wise or healthy part of self nowwhere they're at now is going
to be a challenge inrelationships or in work.
It just transforms yeah.
Speaker 2 (19:21):
And it really is like a study in how to hold multiple
hard things at the same time,like where you're able to say,
yes, I understand that my parentcouldn't come to my tournament
because somebody needed to staywith my sibling to get them to
the treatments that was onlyavailable back home.
It's okay to hold that whilealso holding.
I'm really sad about that.
(19:42):
I'm really hurt about that.
I really wish that that was notthe case.
I imagine that's a lot of thework that you and Jen do, yeah.
Speaker 1 (19:48):
And when our daughter was our youngest was diagnosed
with a condition, a rarecondition.
One of the things that we askedthe doctors well, what are some
services?
That you can have for our otherchild.
You'll laugh at this there's.
Maybe you should start asupport group.
You'll laugh at this there's.
Maybe you should start asupport group.
Speaker 2 (20:13):
Give me 10, 20, 30 years, Right, let me, let me be
a, let me be a someone thatneeds help.
That sounds like so, like tonedeaf, um, like good intention.
Speaker 1 (20:17):
I'm sure Cause so many of the best luckily we
laughed about that in theelevator but like but I'm glad
to hear that chop that this is aspecialty with conditions and
illnesses that focuses on thatfamily dynamic and it's so
important for caregivers,whether it's a parent or whether
it's the other children, youname it that this affects the
(20:40):
family dynamics.
Speaker 2 (20:41):
It absolutely affects the family dynamics.
It can't be ignored.
Speaker 1 (20:44):
Yeah, I interned.
There was a program for myinternship and my master's
called the REM program, whichstands for rare and expensive
case management.
So it was a program wherewhatever the state of Maryland
considered rare and expensive soit was everything from cystic
fibrosis to spina bifida tothings that you know the average
person would never hear ordream about.
(21:06):
And it was very telling to meas a an intern and we would go
into the homes or where theywork to help with services and
the effect that it had onmarriages yes, because, because
the hat that the parent had tobe as primary breadwinner or the
(21:28):
worker or someone often tookthe lead as the caregiver and
that certainly can affect therole as husband and wife or
marriage, whatever that bondingpattern is.
So it was very telling to memuch earlier in my career.
Ooh, there's a lot at play here.
Speaker 2 (21:46):
So much at play.
I think it's so important.
You mentioned that role piece.
Speaker 1 (21:50):
So I think this is one thing that Caitlin and I are
mentioning, Whether it's foryourself as the caregiver,
whether it's for your childrenget support services.
Speaker 2 (21:59):
Absolutely, and talk to your medical team and
hopefully they won't say, hey,maybe you can start something.
Speaker 1 (22:07):
They wisely sent us to the case manager and social
worker.
Yes, that's what you want to do.
Speaker 2 (22:12):
You certainly want to ask your medical team if case
management or social workersavailable.
Look for services.
Speaker 1 (22:19):
Essential, but how many years at CHOP?
Speaker 2 (22:22):
I was at CHOP for about 10 years.
Speaker 1 (22:23):
That is a career in that field.
Speaker 2 (22:26):
It is a career.
Speaker 1 (22:28):
Thanks for helping so many.
Oh, that's sweet Thank you Tellus about the transition from
working there to your nextchapter.
Speaker 2 (22:38):
Yeah.
So, like I mentioned, about six, seven years ago, I started
working in private practicedoing psychotherapy and I was so
fortunate that I was able tostart off very slow, and so the
first few years I was onlyseeing a handful of clients and
(22:58):
I was slowly building up mycaseload and it was really just
such an incredible, incredibleexperience.
Then, come 2020, so many bigthings happened For the world,
for the entire world, butpersonally for me, there were a
lot of well, there were tworeally big losses that forced
(23:20):
that, really forced.
It forced me to take a closerlook at my career, my life, all
of that good stuff.
And in early 2021, I decided toleave my job at CHOP so
bringing to a close about 10years there, and I decided to
focus entirely on mypsychotherapy practice.
Speaker 1 (23:41):
Your family dynamics.
Did that play a role withleaving CHOP?
Speaker 2 (23:46):
Yeah, it absolutely did.
So long story short, cancer hasjust kind of helped itself to
our family.
Speaker 1 (23:59):
It weaseled its way in.
Speaker 2 (24:01):
Yeah, so like cancer really wheeled its way into my
family, as so many families havebeen affected, cancer really
has a way of doing that.
My mom was diagnosed for thethird time in 2016.
And unfortunately, she passedaway in January of 2020.
Speaker 1 (24:20):
Tell me more about your mom's cancer, if you don't
mind.
Speaker 2 (24:24):
Sure, yeah.
So my mom had breast cancerthree times.
She was first diagnosed in herearly 40s.
I was nine years old when shewas diagnosed the first time,
and then we suspect that itrecurred a second time when I
was in grad school and then shehad it a third time.
She was diagnosed for a thirdtime.
Again, we believe it was arecurrence and she was actually
(24:46):
doing really well for a longtime.
She was diagnosed in, I believe, 2016, 2017.
And then, in 2018, my fatherwas diagnosed with cancer.
Speaker 1 (25:02):
He was diagnosed with esophageal cancer and he had
elected to not pursue treatment.
Now, just because of I'm tryingto understand the timing and,
to me, the emotional powerhouseI must have on their children.
You, your mom, was diagnosedwith breast cancer for her third
time while you found out, yourdad.
Speaker 2 (25:20):
Mm-hmm.
Speaker 1 (25:21):
Ooh, okay.
Speaker 2 (25:22):
Yeah, and at the time we heard about dad, we mom was
getting treated.
At that point we knew that thecancer was never going to go
away from my mom, but we hadthought that it was something
that she was going to be able tomaintain with, with ongoing
treatment, chronic treatment andthen with my dad being
(25:45):
diagnosed with esophageal cancer.
For anybody who's had theexperience of esophageal cancer,
it's a pretty brutal treatmentregimen with not the best
outcomes, and so for my dad, hemade the decision that it was
not worth experiencing.
Speaker 1 (26:01):
And I imagine being a husband and at some points a
caretaker to his wife, your mom.
I wonder if that played a rolein the whole thing too.
Just with understanding.
Speaker 2 (26:16):
Absolutely, that's a lot, absolutely so by mid to
late 2018, you know the wholefamily it's myself, my sister,
my brother-in-law we were allaware that both my parents had
cancer dad terminally due to hislack of treatment, and then,
(26:36):
going into 2019, both of their,the quality of their health was
really declining.
Quality of their health wasreally declining and for a large
part of 2019, both my sisterand I were really tag teaming.
My parents were stillautonomous enough to like they
were living on their own.
Dad was taking mom to heroncology appointments, but it
(26:57):
was getting to the point whereit was getting to be too much.
And so I recall, like by mid2019, taking some time off of
work to help with things, um,going to appointments, mom ended
up having to go into rehab forum, um, well, mom ended up being
hospitalized a few times, thenneeded rehab to help recovery,
(27:20):
and dad, it was noticeablydeclining.
Speaker 1 (27:23):
Shall I say another version of a nightmare.
Speaker 2 (27:27):
It was absolutely a nightmare, and it was a tricky
part.
What was tricky about thatnightmare, though, is that you
don't really know it's anightmare as it's happening,
because you're in it.
Speaker 1 (27:37):
Yeah.
Speaker 2 (27:38):
And there were still so many periods of them being
autonomous that I don't think mysister and I I don't mean to
speak for my sister, but I don'tthink we realized how serious
it was.
I have to give so much creditto my sister because she was a
teacher in Delaware at the time.
She was able to come up for hugechunks of time during the
summer over breaks where shereally she really took the brunt
(28:02):
of it in terms of helping themout, and so it just kind of
continued to go that way untilmom got sick for the last time
and needed to be hospitalizedend of December of 2019.
And she passed away in thebeginning of January and I just
think back to that period,despite dad being so sick he
(28:27):
would actually drive down to thehospital every single day.
Mom, was in the hospital forabout a week before she passed
and dad would drive down.
It was a hospital, aspecialized hospital, that was
an hour and a half away.
Drive down every morning, spendthe day with her and then drive
back home at night.
Um, my sister, mybrother-in-law and I we, we
(28:51):
attempted so many times, wetried so hard to get him to let
us step in, you know, and he waslike no, I need to be there
with her again, despite himbeing so sick himself.
Speaker 1 (29:03):
And to me that's the difference between no, that's my
role as husband.
Speaker 2 (29:08):
Yeah.
Speaker 1 (29:09):
And the love of my life, yes, which is a very good
role to look finally at right.
Speaker 2 (29:15):
Yeah, no, I think it was really special and he was
very firm about us not seeingmom like that.
He's like your mom would notwant you to see her like this,
because unfortunately, mom wasjust not in her right mind.
She was very disoriented,unconscious a lot.
Speaker 1 (29:35):
Illness is an illness , right.
Speaker 2 (29:37):
Yep, it's an illness, yeah, and so after mom passed
away, I mean, anyone who's lostsomebody knows how disorienting
it is Like your world iscompletely.
Speaker 1 (29:54):
It's surreal.
Speaker 2 (29:54):
It's so surreal and I consider myself really, really
lucky that our family was superclose.
So my parents were friends.
They were the people I went towhen I was running into really
good things, really hard things.
I loved getting their advice onstuff.
Um.
(30:14):
So, to lose mom was just um,there was an implosion, there
was an absolute implosion, andthen COVID came two months later
and then everyone's worldimploded.
Everyone's world imploded.
Speaker 1 (30:34):
Dare I say the only grace is that you're not working
at a residential hospital atthis time.
Is there any like at thishorrible grief ridden just
emotion filled time?
At least you're not in a tryingto figure that out.
Speaker 2 (30:55):
Yeah, yeah, absolutely yeah.
But again I think, speaking forI think I can speak on behalf
of most healthcare workers whenI say that was also probably one
of the most surreal,disorienting times- how stress
(31:26):
or how chaotic or just gettingthrough the day-to-day routine,
like it's especially in a.
Speaker 1 (31:29):
You know it's yeah, it's bringing back memories.
Speaker 2 (31:30):
Yeah, yeah, it's absolutely awful.
It was.
It was absolutely awful, andI'm sure that is something that
you could do an entire podcaston, just in and of itself.
And so I'm working at thehospital.
I didn't have to go in toooften, but I was going in person
to assist on the COVID hotlinein Philadelphia and so I was no
longer able to see my dad,because my dad was obviously
(31:54):
very sick with cancer.
So, not wanting to add furthercomplication, I wasn't able to
see him.
Speaker 1 (32:01):
Starting two months after my mom died, I wasn't able
to see him, starting two monthsafter my mom died.
So you bring up anothersomething that jumps out at me
when the caregiver wants to care, give but whether it's the
hospital or the situation or thepandemic where the work or the
financial situation that thecaregiver does not have the
(32:22):
control, the ability to supportthe way they want to, and that's
a whole kind of processingtherapeutic and reason to go to
therapy right there in itself,especially when you're in the
middle of that phase or chapterof that caregiving.
Speaker 2 (32:38):
Yeah, absolutely, and I think you know I might.
Speaker 1 (32:41):
I, you know that makes me think of folks who
might live across the countryfrom their family, who might
need help, not being able toprovide care or be a support in
person going to appointments,and then another family member
is overseas, or whatever itmight be, that has their own
(33:03):
stress and frustration, or theone that's doing the caregiving,
and then there's a familymember that they feel that is
barking orders at them.
Yeah oh my gosh.
Speaker 2 (33:13):
So many dynamics.
It could be so many dynamics.
Speaker 1 (33:16):
Yeah.
Speaker 2 (33:17):
So many dynamics.
Speaker 1 (33:18):
So it's COVID.
Speaker 2 (33:20):
It's COVID, yeah.
So again, just to tie it up,dad went on hospice in the end
of 2020 and passed away inDecember of 2020.
And again, having to give somuch credit all the credit
really, to my sister and mybrother-in-law they actually,
the summer of 2020, decided tomove from Delaware up to
(33:41):
Pennsylvania, which is where mydad was living, and they moved
in with him and they were, youknow, boots to the ground
frontline all the way to the end.
And you know, you mentionedearlier that you know people who
want to be caregivers, butcan't necessarily I don't think
I necessarily conceptualize itas that, but can't necessarily.
(34:05):
I don't think I necessarilyconceptualize it as that.
I was certainly very aware ofthe privilege and the benefit of
knowing that my sister andbrother-in-law were with my dad,
but there was that sense well,I'm not there, how much should I
be there?
There was a questioning of Idon't want to get in the way of
maybe established, you know,just like the groove of what
(34:26):
they're doing.
But once he was on hospice, Ithink a lot of those concerns
just went completely out thewindow and I was able to go back
home to my dad's house for likedays at a time where I could
kind of alleviate a little bitwhat my sister and
brother-in-law were doing.
Speaker 1 (34:43):
And that's such a powerful reality-based thought
pattern Questioning, worrying,doubting.
Maybe it's a level of guilt andshame for some people.
Am I doing the right thing?
Am I not?
Do I personally feel that?
Do my person that I'mcaretaking for feel that?
Do my family memberspotentially feel that and those
(35:04):
are all things that I'll say isis normal for to come up for a
caregivers or family members,that that that happens?
Speaker 2 (35:14):
And there's no right way of doing this.
Right, I mean it's and this issomething, the more I'm I'm
working with caregivers reallyemphasizing like there's no
right way of doing this.
Not a cookie cutter thing forthis.
Not at all.
You weren't prepped for this.
Speaker 1 (35:54):
And utilizing support whether it's coaching, whether
it's friends, family therapy tohelp you explore and figure out
how showing up as a caregiverlooks for you.
Yeah, I often help peopleidentify a lot of forms of
therapy.
What is my healthier version ofthis?
Yeah forms of therapy.
What is my healthier version ofthis?
Yeah, yeah, and sometimesthere's a lot of context and
variables, that that can getmurky and muddy and we don't
always know what that is.
But helping people identifywhat is my healthy, next right
choice, what is my healthy thingthat I can do where I feel
(36:18):
relatively good with this beinghealthy, whether it's normal or
not, whether it's good, this ishealthy.
Is this healthy for me and theone I'm doing it for?
It's often a good parameter forpeople.
Speaker 2 (36:29):
Yes, I really like that.
Speaker 1 (36:31):
Yeah, it's a good one so how did this family
experience, grief, covid,pandemic, history of working
with infants and babies withchronic illnesses lead to where
you're at today?
Speaker 2 (36:49):
So both of my parents passed away in 2020.
And after navigating that um,both as a unspeakable, horrific
loss, but also as something thathad consumed so much of my time
, Professionally and personally.
Yeah, yeah, absolutely.
Speaker 1 (37:09):
So how did these personal experiences in addition
to your working with infantsand babies and adolescents with
chronic illnesses how did ittransition from grief and loss
and to where you're at today, tohelping people as a coach for
for those with chronic illnessesand helping caregivers and I
(37:34):
know you often work andspecialize with women
caregivers- After going throughthese experiences, After going
through these experiences, I'verealized that there is a
particular type of, dare I say,stress, pressure, disorientation
(37:55):
for folks who are caregivers intheir jobs.
So I would have consideredmyself as a caregiver, as a, a
social worker, sure,professional caregiver, a
professional caregiver, but nota professional codependent.
That's different.
Speaker 2 (38:15):
That's a joke, it's not real.
Go ahead as a professionalcaregiver.
I would use that term to definefolks who work in education,
who work in advocacy who work inservice.
Yeah, absolutely.
You do get used to a certainlevel of need and you get used
to showing up and trying toproblem solve that need you.
(38:35):
Your brain is wired to look forpotential problems, how to
solve those problems.
You exhaust your empathycapacity for the people you're
working with.
But then, when something bighappens at home, all of a sudden
you realize you're taking somany of these skills you use
(38:56):
professionally and now you'reusing those skills personally
with people that you haveestablished relationships with,
people you love, people who haveperhaps been your caregivers
through life, and it's reallydisorienting.
It's really disorienting.
So there's that disorientationpiece.
There is also, frankly, aburnout piece.
(39:19):
There's such burnout when we'retalking about caregivers.
They're already burnout.
We're already burnout ascaregivers.
Speaker 1 (39:35):
There's only so much energy that you can give people
and as as service orientedprofessional field, you
literally are giving a lot,whether it's whether it's
tangible, or time, or present,or emotion, or empathy or actual
physical actions.
It depletes you, oh my gosh.
Speaker 2 (39:50):
Like all of these systems again, whether we're
talking healthcare, education,service, advocacy, the systems
and the other people in thesystems just relentlessly demand
.
Speaker 1 (40:00):
Yeah.
Speaker 2 (40:01):
And we try to show up yeah, and oftentimes we don't
show up as well as we wish wecould, because we're burnt out,
we have nothing left.
Speaker 1 (40:09):
And we're talking about the pandemic how many
medical professionals died bysuicide?
Yes, yeah, I mean burnout.
Speaker 2 (40:21):
So these caregivers are now also looking at
providing care to someone theylove at home, whether it's for
me in my coaching business, Ifocus specifically on
professional caregiving women,and they're exhausted, they're
burnt out.
For me, I see so many uniquedynamics there that we don't
(40:44):
talk about, that aren'tnormalized, that aren't
supported.
Speaker 1 (40:49):
So let's do it.
Let's dive a little bit deeperinto that and tell us more about
the needs or services that youoften help when it comes to
these caretakers.
Speaker 2 (41:00):
So I think when we're talking about caregiving you
mentioned roles earlier Rolesare huge.
Roles are how we are defined orunderstand ourselves in
relationships.
If you're in a partnership andall of a sudden your partner
gets chronically or terminallyill, that partnership completely
shifts because it's not fully apartnership anymore.
(41:22):
There is an element ofimbalance where you are now the
person supporting the other andthat results in, I think, a lot
of identity questioning.
Big part of what I do is helpget curious with my clients
around identity, around thoseroles, around those
relationships, how they haveshown up in those relationships,
(41:43):
how they're now having to showup in those relationships, how
they want to be able to show upin those relationships.
Speaker 1 (41:51):
And often with a dramatic change and shift to
your point.
A lot of times in couples workI can help couples identify.
You know the whole balancething again.
Well, I'm only about 80% today.
Or I'm only at 30% today.
Well, I'm at 30% too.
Oh, good to acknowledge that.
But when it comes to caregiving, whether it's with illnesses or
(42:13):
whatever the condition might be, one of these partners may
never be at that 100% again andthat's a hard shift and a grief
period.
Speaker 2 (42:24):
And to grieve that and realize that and work
through that is oh, my goodness,it's so hard, and I think
that's like the first big thingto acknowledge.
This is hard and this isn't howit was supposed to be.
Speaker 1 (42:37):
Yes.
Speaker 2 (42:39):
It's just not how it was supposed to be, and it's
really awful that it is.
Speaker 1 (42:43):
And you can be angry and pissed.
Speaker 2 (42:46):
Oh my gosh, you should be angry and pissed.
Speaker 1 (42:50):
And that'd be okay, not filled with guilt and shame.
Speaker 2 (42:52):
No no no no, but it's good that you say that, because
that's probably one of thebigger struggles I see in my
clients.
The bigger struggles.
I see in my clients is theguilt and shame that comes with
how they feel now that thoseroles have shifted.
There's resentment, there'sfatigue, there's anger and
(43:16):
there's I mean I've had clientssay I hate this.
You know all of that is normal.
Speaker 1 (43:22):
Isn't that real?
Speaker 2 (43:23):
There's nothing wrong with that.
Speaker 1 (43:24):
Let's use the word healthy.
Speaker 2 (43:26):
It's healthy because, again, this isn't how it was
supposed to be.
That's a really big part ofjust validating.
Speaker 1 (43:33):
Yeah, and what we do with that anchor.
Speaker 2 (43:35):
Yes, yes.
Speaker 1 (43:37):
And grieve.
And where do we put that?
Anger is part of the process?
Speaker 2 (43:42):
Yeah, and that looks different with every client.
Speaker 1 (43:44):
Yep.
Speaker 2 (43:46):
With every person.
Another thing that comes up alot in my work with caregivers
is also figuring out how tostill take care of themselves.
Speaker 1 (43:56):
Oh good one and.
What I have time to focus onmyself.
I didn't do that when I hadespecially mothers right With
children.
Speaker 2 (44:06):
I didn't, you know, prioritize it, it's, it's it's a
huge one physician when Iworked with parents in that
(44:26):
position at CHOP.
There are so many uniquenuances to that and for that
reason I do not focus on them inmy coaching business because
that is so specialized in my, inmy very humble opinion.
I think that that's reallyparticular.
Speaker 1 (44:39):
You're very experienced in that world, thank
you.
Yeah, so I think parents whoare caregivers of children who
are chronically or terminallyill is a very particular type of
caregiving which I do not focuson.
Speaker 2 (44:55):
It's a whole other level of intensive, isn't it?
Speaker 1 (44:56):
It is yeah.
Speaker 2 (44:58):
It is, but I think that the notion of taking care
of oneself is already prettyforeign to most professional
caregivers, I'd go so far to sayfor most adults.
I think we struggle with that,at least in the society I know
which is really in America, andeven now, when we talk about
(45:22):
taking care of ourselves and oursociety, it's very consumer
driven, it's very commercialized.
We talk about self-care asbeing like get these products,
use these services, which is, Ithink, so problematic Quick fix.
Speaker 1 (45:39):
Yeah, how do I fill up my energy tank really quick?
Speaker 2 (45:41):
Yeah, which is just so not healthy.
So when I talk about this withmy clients, it's more about
First taking a look at how theyactually spend their time.
And I say this both as aprofessional and as someone who
has been in the caregiving rolethat, again, when you're in it,
you don't really realize thatyou are spreading yourself super
(46:07):
thin.
You're adrenaline fueled,you're racing around, you're
just trying to check things offa list, make sure things are in
place.
You don't realize you'reburning out even more than
you've been burned out.
And so, honestly, even justcoming to work with a therapist
or a coach is the first step inacknowledging that maybe there's
(46:30):
a better way of doing this,maybe there's a more intentional
way of doing this.
Speaker 1 (46:35):
It's the adaptation to what has to get done.
Speaker 2 (46:39):
Yeah.
Speaker 1 (46:40):
And then it's almost like the blinders for people as
caregivers.
And then it's our ability toadapt to um our lifestyle and I
always say everybody copes.
We're going to find a way tocope in a healthier and
unhealthy way, or survive or getthrough the daily life.
And we adapt and a large partof our audience understands the
(47:05):
addiction adaptation Caitlin'sdoing.
You're doing a wonderful job ofbringing the, the awareness and
the reality, at any level orseverity of caregiving, that in
some ways necessity canultimately shift into kind of
(47:28):
like cruise control where it canbe an adaptation of just like I
just gotta, I gotta go, I gottago, I gotta go, and then just
our energy tanker just goes andgoes.
Speaker 2 (47:39):
Yeah, and I mean the majority of caregivers and I can
certainly say all of my clientsare clearly doing it right Like
they're surviving, they'regetting it done, but they're
realizing this is not working.
Speaker 1 (47:54):
It's not sustainable.
Speaker 2 (47:55):
It's not.
Working Like this issustainable.
It's not sustainable.
And so, working with folks tofigure out well, what does
taking care of yourself, whatcould that look like while you
are also a caregiver?
Is there a way that we can holdboth of those things at the
same time?
And again, that looks differentfor every person, but I think
(48:17):
it's essential.
Speaker 1 (48:19):
Yeah, yeah, and I am very upset I've been almost 50
minutes in and Zal the co-host,our co-host, could not come to
Sweden with us.
I should put this at thebeginning of the episode.
You're going to have to redo theintro but what he's so huge one
as a a life coach and ameditation coach.
(48:40):
It doesn't have to be an hour,it can be five minutes of
sitting with yourself andconnecting to your body through
breath work or body work, andthe thing that he always hit me
with years ago, as my veryamerican self.
He just looked at me and hesays I find time to brush my
(49:01):
teeth every day.
Oh, he didn't mean it as a jab,but it was like, oh yes, I can,
literally, before I go to bed, Ican put down my phone and do
some inhale and exhale to slowmy mind and allow my body to
relax for that very moment whenI'm just so like running like a
chicken with my head chopped offbecause I am caregiving or
(49:21):
whatever it might be, and that'sjust something that can be so
valuable and I imagine you helppeople identify what that is for
them to yeah, in this process,yeah, I mean again, there's some
.
Speaker 2 (49:34):
There are so many differences depending on who the
person is, what the situationis, but I would say there's some
universal things that show up.
Like I mentioned, there's thepiece of trying to manage the
caregiver's own emotionalresponse to the situation,
(49:54):
trying to manage their grief,their sadness.
That's pretty universal.
Speaker 1 (50:00):
And I want to highlight that oh, what am I
actually feeling?
Speaker 2 (50:04):
Yeah.
Speaker 1 (50:05):
I'm a.
My role is caregiver and beingthere for them.
Can I allow myself to identifyand feel what I'm feeling, even
if it is anger or just fear,whatever it might be a good.
Speaker 2 (50:15):
I like that and feel what I'm feeling even if it is
anger or just fear, whatever itmight be Good.
I like that.
Yes, Give myself permissionAbsolutely.
Then there's also thelogistical piece.
Again, that's pretty universalwith my clients.
The question is like how do Ifit this all in one day?
How do I get all of myobligations at work done?
Speaker 1 (50:36):
How do I?
Speaker 2 (50:36):
show up for the person I'm caregiving, which
could probably include a lot ofthe same things that you're
doing at work, from phone callsto coordination to physical
showing up.
That's pretty universal, and sothose are like two of the big
areas that I focus on in my workwith my clients and trying to
(50:57):
figure out practical solutionsto both of those things, and it
could look like, as youmentioned earlier, like I'm
actually going to brush my teethand just notice brushing my
teeth and being practicing someembodiment there, practicing
some mindfulness.
It could also look like I'mgoing to make a list of the
(51:18):
healthier options at these fastfood restaurants that are near
my house, so I don't need toworry about cooking, I don't
need to worry about groceryshopping.
I just know I can grab this atChipotle and not feel awful.
It could be deciding to investsome money, which I recognize is
a privileged thing, butchoosing to funnel some money,
some income, into having someoneclean your house having, you
(51:40):
know, like outsourcing, I guess,is to get your time back, yeah.
Yeah.
Speaker 1 (51:46):
What about the people that may take the healthy part
of caregiving and compound itwith the codependency or the
lack of boundaries?
Or maybe they don't have tocare.
Give as much as they do.
Speaker 2 (52:04):
That's such a good question.
That's also something that's socommon and, I would say, also
really normal, because, again,we don't know how to do this.
Speaker 1 (52:16):
We're very much Turn that off, yeah.
Speaker 2 (52:19):
This is all on the job training, and I think most
of us and I speak personallyhere go into it with no
boundaries.
I think that's part of theadrenaline rush.
I think that's part of thethat's part of the adrenaline
rush.
I think that's part of theburnout, because for most of us
who have experienced burnout,who are chronically running high
(52:42):
with adrenaline cortisol,everything's a crisis,
everything's urgent, we'rereacting, we're not responding,
and so we're just showing uphowever we can and then thinking
about it later.
So I think that lack ofboundary is super normal.
That takes some work, that takessome intention.
Speaker 1 (53:04):
And I think the things that you mentioned, first
the what am I actually feeling,how do I prioritize?
Then there can be some mentalcapacity to identify how do I
set healthier boundaries with,whether it be family, whether it
be the person that I'mcaretaking or caregiving for,
whether it be work and that is,I think, a big thing for a lot
(53:28):
of, like you said, caregiversthat, oh, how do I do this in
the healthiest way possible?
Speaker 2 (53:33):
And there's something new every day for a lot of
people, yeah, and so I wishthere was some magical formula
that everyone could follow interms of setting those healthy
boundaries in general, but alsoin caregiving.
I don't know if there is one, Idon't know of one.
So that takes somecollaboration in my work with my
(53:54):
clients, and it's taking smallsteps.
It's asking little questionslike is this really your job?
Is this really yourresponsibility?
Do you have control over this?
Is there someone else who coulddo this?
Is there someone else whoshould be doing this?
Speaker 1 (54:10):
And I like all those questions and one of the things
that I often relate those thingsto for people that care give
some of my clients that might beabusing substances.
I work with family members it'sa lot of times and tell me if
you agree.
It's often fear-based yes right, it's the fear of.
I wish I remembered any ofthose questions that you just
(54:35):
said.
It's like is is this my job,right?
Is this a healthy priority?
Is this, yeah, is?
Is this in?
Speaker 2 (54:48):
my control?
Do I have control over this?
Is this my responsibility?
Do I have ownership over this?
Speaker 1 (54:55):
Why do I want?
Speaker 2 (54:55):
control over this, yeah, but I absolutely agree
with you.
I think it's fear-based, Ithink it's rooted in anxiety, I
think it's rooted in, justobviously, also desire for the
best for the other person.
And love and love and we thinkwe have control over it.
But yeah, I think it's reallyrooted in that fear and that
(55:15):
anxiety, and so it, when we talkabout setting boundaries, it's
it's trying to figure out howcan we be kind with ourselves,
be gentle with ourselves, andconfronting that fear and
anxiety, maybe poking aroundthere a little bit and figuring
out.
Well, okay, if I know thisabout myself, if I know that
this is my, my fear, and let'salso honor the fact that there's
(55:39):
some legitimate fear andanxiety going on here and that's
why we need to be really gentlewith ourselves, because,
especially when we're talkingabout chronic and terminal
illness, there's a lot oflegitimacy, absolutely.
Speaker 1 (55:54):
And I think you, as a coach, and support groups and
therapists, help us identifythat.
When we don't, I'll speak formyself.
Don't realize this is fear.
I don't realize this is anxiety.
I don't realize this is oh,I've got a reason to feel
depressed, right, yes, Like ofcourse, so of course.
(56:15):
I'm going to cope with, feeldepressed, right?
Yes, like of course.
So of course I'm going to copewith my fear, my anxiety, my
depression, the unknown, and Idon't always do it in the
healthiest ways.
So having a coach, having atherapist, having a support
group, can help with that.
So, clearly, we've talked abouta lot of what you do in your
profession and what you did atCHOP as a therapist, and we're
talking to you, the things thatyou provide your clients as a
(56:36):
coach.
When did that transitionactually happen for you?
From during COVID, I guess, andhaving your private practice,
and we're talking about some ofthe skills you give these
caregivers or family members,about your coaching practice.
Speaker 2 (56:52):
After I decided to leave my position at up top, I
focused full-time on my privatepractice as a therapist and that
practice has grown to focusprimarily on chronic illness,
where I work with lots of folksin therapy who have chronic or
terminal diagnoses, and alsocaregivers or other people
(57:12):
affected, because, as we weresaying earlier, many people are
affected with chronic illness,not just the patient, and in my
work I began to realize and gainfurther insight that there is
an element of caregiving thatdoesn't necessarily need the
clinical therapeutic supportthat I provide in a therapeutic
context as a therapist context.
(57:39):
As a therapist, there arepractical, solution-driven
approaches to caregiving thatcould be met subclinically, and
so I decided to expand mypractice to also include
coaching, and in my coachingpractice I focus exclusively on
professional women who arecaregivers professionally, who
are now caring for loved ones athome, and so that coaching
(58:00):
business has been evolvingslowly over the last two years.
Speaker 1 (58:05):
Yeah, that's really powerful work and I think the
coaching aspect that you bring.
This is such a phase of theirlives where energy is finite and
it sounds like your coachingpractice helps the
implementation at such a stagethat it's so important to to
(58:27):
apply and not just realize, butapply these things that you're
giving them.
Speaker 2 (58:34):
Yeah, and I appreciate that from a coaching
standpoint.
Again, we're not talking abouttherapeutic level intervention.
We're talking about reallygoal-based problem solving
intervention packaged.
Really, you know, it's not along-term investment in terms of
exploration, like therapy is.
Speaker 1 (58:55):
Talk more in your coaching practice just balancing
the caregiving responsibilitieswith personal wellbeing.
We've certainly been touchingupon this, but talk a little bit
more about that, because Ithink that's the crux for
everyone that can relate to this.
Speaker 2 (59:12):
In my coaching practice I really like to
partner with my clients ingetting clear on what they're
missing, where they realizethings aren't working.
I guess that's really thesimple way.
By the time clients are comingto me, they're coming to me
because they know somethingisn't working.
Speaker 1 (59:31):
One thing that we haven't mentioned yet is because
of your decade-long career inthe medical world with
caregiving and chronic illness,I think you really bring a
strength and a skill set thatmaybe some other coaches might
not have.
Where my mind goes, thechallenges with unresponsive or
(59:56):
inadequate medical support thatcan be so hard to navigate as a
caregiver, and whereas atherapist you might have to be I
don't know what word I'mlooking for but as a coach you
can really provide some skillsets to them in this world of
(01:00:17):
really stressful care when itcomes to the medical field for a
lot of people.
Touch on that a little bit.
Speaker 2 (01:00:22):
Yeah, absolutely.
I think when you're working ina coaching capacity or at least
when I'm working in a coachingcapacity I feel like there's a
lot more permission to actuallygive some advice.
Um, coming from my background,it's it's a bit more intuitive
for me to say, hey, have youexplored this?
Have you asked these questions?
Have you considered approachingit this way?
Have you asked about theseservices?
(01:00:45):
So that can be really useful.
I mean, I know that a lot ofthose things aren't necessarily
possible for many people, and sothen that's a different
discussion.
But yes, it's been very helpfulbeing able to pull from my
experience and using thatinsight to encourage
(01:01:06):
self-advocacy, asking questions,digging a little deeper and
accessing services.
Speaker 1 (01:01:12):
Yeah, and a lot of times in a caregiver role.
It often feels like reacting.
Speaker 2 (01:01:19):
Yes.
Speaker 1 (01:01:21):
And I think the example that you're giving is
being able to help peoplesometimes be proactive or feel a
little bit more grounded incertain medical situations and
hospital situations where peoplecan feel a little bit more
prepared for the unknown.
Speaker 2 (01:01:39):
Absolutely, and I frequently distinguish between
being reactive versus beingresponsive.
And again we're talking aboutpeople who are really charged,
really burnout.
Speaker 1 (01:01:50):
Stressed, fearful.
Speaker 2 (01:01:51):
Super stressed, fearful.
So reactivity is the default,and so figuring out how can we
shift from being reactive tobeing responsive and being
giving ourselves permission,even if it's just a few extra
seconds, of taking some deepbreaths before we choose our
response to something, can be soempowering, and it can be a way
(01:02:14):
of accessing our agency.
It can be a way of remindingourselves like we do have some
semblance of control, even ifit's a small little bit.
Speaker 1 (01:02:24):
I mean ideally as the caretaker or caregiver we want
to come from, this wise part ofself.
Yeah, that's a good place tocome from.
Speaker 2 (01:02:33):
Yeah.
Speaker 1 (01:02:34):
Well, thanks so much, Caitlin, for joining us today
in Sweden.
Speaker 2 (01:02:38):
Well, Luke, thank you so much for having me.
Speaker 1 (01:02:41):
This was great.
Is there anything else that youwant to say as we wrap up this
episode?
Speaker 2 (01:02:48):
I would certainly encourage your listeners to give
themselves permission to askthemselves if it's possible to
do things differently, if it'spossible to be more kind to
themselves through this process,if there are people or
resources, whether informal orformal, that they can access to
(01:03:12):
help them navigate this so theydon't feel alone while they're
doing it, that sense ofisolation.
So that would be my last littlebit of advice.
Speaker 1 (01:03:23):
Yeah, you're not alone in this process and,
clarity's sake, caitlin comesfrom Paris via Pennsylvania.
Yes, through her coachingpractice, even though she spends
most of her time in Paris, shehas the ability to work with any
of you worldwide.
Speaker 2 (01:03:41):
That is very true, I do.
Speaker 1 (01:03:43):
So I'll put her information in the episode notes
and in closing.
Caitlin Dwyer illuminated thelandscape of chronic illness and
caregiving with herknowledgeable insights and
personal experiences.
Through our discussion, we'veexplored the emotional and
practical challenges faced bycaregivers in those navigating
chronic illness, shedding lighton the universal truths of
(01:04:04):
healthy change, resilience,compassion and the human spirit.
As we wrap up this episode,remember that you don't have to
navigate these challenges alone.
Support groups, resources,professionals like Caitlin or
even working with Coach Caitlinare available to provide
guidance and understanding alongthe way.
(01:04:24):
Whether you're seekingconnection, practical advice or
simply a listening ear, knowthat help is within reach.
Reflect on the lessons learnedand stories shared and, if you
resonate with our conversation,consider sharing this episode
with others who may benefit fromthis wisdom.
Your support helps us continueto amplify important
conversations and provide viableresources to our audience.
(01:04:45):
If you haven't yet and chanceyou haven't give us a rating on
the platform you listen to andreview, if able, it helps us
reach more potential listeners.
Together, let's foster acommunity of understanding and
support where no one has to feelalone in their journey.
Thank you for joining us onthis journey of exploration and
(01:05:05):
discovery.
Until next time, take care andbe well, thanks, thank you.
Picture this You're standing at a crossroads, faced
with unexpected challenges thatreshape your life's journey.
Whether you've experienced itfirsthand or not, the path of
living with chronic illness orbecoming a caregiver for someone
is a transformative one, filledwith moments of profound
resilience and heart-wrenchingvulnerability.
Let's just say this personalexperience isn't on your life
(00:29):
bingo card.
If it isn't, why should youtune in?
Well, because the lessonslearned from the journey through
chronic illness and caregivingtouch on the core of human
experience, revealing deeptruths about resilience, empathy
and the indomitable humanspirit.
Caregiver, someone affected bychronic illness or simply a
(01:06):
curious listener.
This episode promises to offervaluable insights and a deeper
understanding of the humancondition.
In today's episode, we inviteyou to walk this path with us,
as we uncover the hidden storiesand powerful lessons from those
who navigate these challenginglandscapes daily.
Join us for an enlighteningconversation with Caitlin Dwyer,
clinical social worker, aseasoned therapist and a
(01:28):
visionary coach in the realm ofchronic illness and caregiving.
Caitlin's journey began in thebustling emergency room of the
world-renowned Children'sHospital of Philadelphia, where
she provided crisis interventionand support in the emergency
room and nephrology unit forchildren awaiting life-saving
organ transplants, oftenreceiving dialysis within the
(01:53):
first few months months of life.
Her career has been a tapestrywoven with threads of empathy,
strength and profound insight,particularly as she's faced
personal losses and the globalupheaval of COVID-19.
In addition to her professionaljourney, keelan brings a deeply
personal understanding ofcaregiving to our discussion.
(02:15):
Having navigated multiple boutsof cancer within her own family
, she intimately understands theemotional and logistical
challenges that accompanycaregiving for loved ones with
chronic illnesses.
This firsthand experience hasimbued her with a profound sense
of empathy, resilience andwisdom, enriching her ability to
support others on their owncaregiving journeys.
(02:37):
Caitlin will share her uniqueinsights on essential skill sets
for navigating the challengesof living with chronic illness
and those that do the caregiving.
So tread carefully with us aswe explore these profound
experiences, recognize thestrength and vulnerability and
discover that, while the journeyis unique for everyone, the
destination of well-being is ashared horizon Well before we
(03:03):
get started.
This episode is still beingbrought to you by the Recovery
Collective in Annapolis,maryland.
However, we are recording inStockholm, sweden, well, caitlin
, we have been listened to by 60plus different countries, and
Sweden being one of them, and wecome from Annapolis and,
caitlin, you come from Paris.
(03:24):
So we are traveling from afarand we're glad to do so.
So thanks for so much forjoining us in Sweden.
Speaker 2 (03:31):
Thank you so much for having me.
Speaker 1 (03:33):
And certainly part of our purpose and our drive is to
provide a collective solutionto health and wellness, and I've
realized that Sweden is doingthat for its residents.
So I'll give you and some ofthe listeners some stats that
Sweden was named the bestcountry for mental health in
2023 and in 2024 retains thattop spot.
(03:57):
So here's some of thestatistics, since we're a
podcast about health andwellness.
The percentage of people in thecountry who work long hours is
less than 1%.
Wow, that's not very American,is it?
Speaker 2 (04:10):
That is not very American at all.
Speaker 1 (04:12):
What's considered long hours?
50 hours plus.
So less than 1% of populationworks less than 50 hours.
Another statistic that they say, man, it's great for mental
health.
The average number of hourspeople have in the day to devote
to sleep, leisure and personaltime is over 15 hours every day.
Speaker 2 (04:31):
Wow.
Speaker 1 (04:32):
Yeah, that's incredible.
So it's not the eight, eightand eight.
Speaker 2 (04:36):
I guess yeah.
Speaker 1 (04:38):
That's ideal, and maybe they actually hit that
ideal.
I don't know, wow yeah,actually hit that ideal.
I don't know, wow yeah, and Ithink we've been here a couple
of days now and just noticingwe're here during the week and
the work week and just peopleoutside, and whether it's the
lunch hour or taking walks andenjoying the granted, it's a
beautiful spring here in Sweden.
It's been gorgeous, lovely andnot humid, and I think the birds
(05:01):
are happier too.
Speaker 2 (05:03):
They sound happier.
And you can't forget Fika.
Speaker 1 (05:05):
Fika.
So Fika here is, I guess, acultural term, where you take
time throughout the day, oftenbefore lunch or in the afternoon
before dinner, where you sitdown, enjoy a warm drink, some
tasty pastries and justsocialize with your coworkers or
neighbors.
Yeah, I've loved Fika.
Speaker 2 (05:25):
It's incredible and it's so normalized, like it
doesn't feel out of place inthis culture, like they
incorporate that so naturallyand it helps it, of course,
contributes to their mentalhealth.
Speaker 1 (05:37):
Oh, my goodness, are we talking to a teacher?
Here in Sweden and they have abuilt-in time slot for the
teachers to take FICA, usuallyaround 10 am, and it's not to do
the lesson planning, but no,they actually get together and
have a warm drink and peoplebring homemade pastries and
apple pies at 10 am.
That's wonderful and they'vedone it on Tuesdays and they did
(05:59):
FICA Friday and I want to bringthat back.
Speaker 2 (06:04):
How hard do you think that would?
Speaker 1 (06:05):
be to do in America.
It's worth a try.
Hey, we like change the culturein a good way.
Speaker 2 (06:11):
Absolutely.
Speaker 1 (06:12):
So another thing the total area of designated green
spaces within the country is sovery high and even in the city
there's so many just gardens andwalking paths and bicyclists
and places to sit down outsideto eat your lunch and enjoy the
outside, and we've certainlyenjoyed that absolutely, and we
(06:32):
were talking earlier just abouthow clean the air feels and
smells, and just even for a city, absolutely, it's so wild it's,
yeah, not the norm us.
They're very big on theirreducing emissions and things
like that, and Sweden even hasover 95,700 lakes.
Oh my gosh, I didn't know it wasthat lake heavy, but Stockholm
(06:55):
is a city of lakes, isn't it itreally?
Is Little islands and lakes.
Yeah, it's been awesome.
And lastly, the percentage ofgovernment health care
expenditure dedicated to mentalhealth is one of the highest
shares of government spending inall the world.
So they're not just reactive tomental health, but they're
trying to prevent the onset ofmental health disorders as well,
(07:17):
and includes investing heavilyin resources and services for
people.
It's pretty cool.
Speaker 2 (07:23):
It's really cool.
It's certainly a model weshould all be looking to.
Speaker 1 (07:26):
Absolutely, from Paris to the States, come to
Sweden.
Thanks for traveling here andmeeting us.
Speaker 2 (07:33):
Absolutely.
Again, thanks for having me.
Well, let's jump into it.
Speaker 1 (07:37):
Let's talk about your early history working at CHOP.
Speaker 2 (07:40):
And CHOP stands for.
So CHOP stands for Children'sHospital of Philadelphia.
So I actually started at CHOPas an intern and I worked in the
emergency room and shortlyafter my graduation I was hired
and worked in the emergency roomand then I also joined the
nephrology department.
So between those twoexperiences I was really exposed
(08:00):
to so many different stories ofillness, both acute and chronic
, and not just the patient'sexperience but also how that
experience is shared with thefamily.
Yeah, so CHOP stands forChildren's Hospital of
Philadelphia and it is arenowned research and clinical
center which specializes in somany unique chronic illnesses,
(08:26):
really innovative in their care.
And working in the nephrologydepartment, which nephrology is
all about taking care of thekidneys, it was really exciting
to see how we were able to helpkids with really serious, really
serious chronic illness.
Speaker 1 (08:48):
So you're working with kids that, like I said,
with just a few months old, thatneed kidney transplants and or
on dialysis.
So, as a social worker, I'msure your role involved a lot of
worried and stressfulcaregivers and family members
and parents.
(09:08):
And tell us a little bit aboutthat.
Speaker 2 (09:10):
I do have my social work license and my role as a
medical social worker initiallywas far less therapy focused A
social worker in the medicalsetting, particularly in
pediatrics.
There's case management, thereis psychosocial assessments and
providing kind of likeon-the-spot therapy, because the
(09:31):
age range of our patients couldbe as young as newborns all the
way up to older adolescents.
I built rapport with thechildren, I built rapport with
the family and tried to helpsupport them navigating this
really life-disruptingexperience.
Speaker 1 (09:50):
You say life-disrupting.
I often call it the parent'snightmare.
Speaker 2 (09:54):
Yeah, and I had plenty of parents use that word
many, many times.
It was so jarring, so trulylife-changing, so much grief
associated with with some ofthese diagnoses.
There was certainly a spectrumof acuity.
(10:14):
There were many kids who Iwould eventually see in my
particular role.
I worked in the dialysis unit.
Primarily these are childrenwho no longer have working
kidneys and need to have amachine do the job of the
kidneys.
There's a couple different typesof dialysis.
There's a type that you do athome every day.
There is a type that you haveto come to CHOP and do three to
(10:36):
four times a week and this isall.
While you wait for a kidneytransplant, you have to keep
doing dialysis until that kidneytransplant occurs.
And so you can imagine ifyou're doing dialysis at home
every night, the parents aredoing that.
Your home becomes a medicalcenter.
Rooms are transformed, they'refilled with equipment, supplies.
(10:59):
Overnight, your child'sattached to a machine where
alarms are going off, wherethere could be emergencies.
If you're doing it in center,your parents who are trying to
get their kid to a hospital thatcould be up to two to three
hours away, because pediatricdialysis is super duper rare.
Not just every hospital hasthat, so the toll of this
(11:23):
caregiving was prettysubstantial.
Speaker 1 (11:27):
Talk more about, and you said the word grief.
If you're not going throughthis, I wonder if that gets lost
in some people that can'tempathize or relate to that.
What do you mean by this griefexperience for the caregivers?
Speaker 2 (11:40):
Yeah, you know, it's really heartbreaking when,
especially as a parent, you havethis beautiful child.
You have all of these hopes anddreams.
You're imagining what it'sgoing to be like growing up, or
seeing your child grow up, andthen you get a diagnosis like
this and all of a sudden, thosehopes and dreams change.
(12:02):
They could be completelyobliterated.
And dreams change, they couldbe completely obliterated.
And so there is this griefabout a loss of normalcy, a
grief around what your childwill be able to do, not be able
to do, perhaps grief around evenlife expectancy.
Sure.
Speaker 1 (12:22):
Yeah at minimal, having what we thought would be
normal and going into a newnormalcy the way you explained
that.
That's a grief period.
Speaker 2 (12:30):
It's absolutely a grief period and that was
something that I reallyencouraged and I have to say our
entire medical team was reallygood at doing this, really
encouraging parents to processthat, like we really did all
recognize.
We know this is not what youthought this was gonna be, In
fact we know that this isn't howit should be, but this is what
(12:53):
it is.
This is really awful.
Let's try to work through this.
And our hospital, I think, wasexceptional at providing that
psychosocial facet of care tohelp honor just the intensity
and significance of that toll.
Speaker 1 (13:13):
Yeah, and we as clinical social workers know how
important that is for changeand transition and coping with
that new change.
Yeah, that's big.
That sounded like a stressfulwork environment you were in.
Speaker 2 (13:29):
It's a very stressful work environment.
Speaker 1 (13:31):
You should see her face.
Speaker 2 (13:33):
There's a reason I'm not in that environment anymore.
Speaker 1 (13:37):
So you did quite the service work, social work.
For how many years were you atCHOP?
So I was a medical?
Speaker 2 (13:43):
yeah, I was a medical social worker, Gosh.
I was a medical social workerat CHOP for about 10 years and
during that time, about five,six years into my time there, I
got my license, my clinicallicense.
So I became a licensed clinicalsocial worker, which, in
(14:04):
Pennsylvania, that gave me theopportunity to open a private
practice and I began to seeclients in a private practice
therapeutic setting, which was abit of crisis management
education.
How else would you explain?
Speaker 1 (14:19):
those very viable skills that you were helping
caregivers with.
Speaker 2 (14:33):
Yeah, I would say in um at CHOP, it was a lot of
education, a lot of crisismanagement, a lot of immediate
problem solving, a lot ofsolution focused work like, okay
, you can't access thesemedications, you can't access
this medical care, you can'taccess these supports how can we
(14:54):
figure out a way of gettingthat?
A lot of liaising between thehospital or the medical team in
schools, with children and youthservices li Liaising was a big
part as well.
Speaker 1 (15:06):
And with this example , you're showing how this type
of chronic illness islife-changing, not just for the
client experiencing this chronicillness, but the caregivers.
Speaker 2 (15:20):
Yes, yes, tremendously life-changing.
I recall some parents having tomake really hard decisions
should one of the parents end upresigning from their job
because someone was going tohave to bring their child go to
a medical treatment bythemselves.
Certainly, many parents had toallow their child to come to
(15:51):
treatments by themselves becausemaybe they weren't in a
position where they could notwork anymore.
Yeah, so there was a toll oncaregiving from a logistical
standpoint, in terms of jobs, interms of transportation costs,
in terms of jobs in terms oftransportation costs.
A really distressing challengefor these caregivers were also
that for many of these families,the patient, the child who was
(16:15):
getting dialysis, was not theironly child.
Yes, and so we don't talk toomuch about how the siblings Are
affected.
Yeah, and we talk about itwithin pediatric healthcare,
which is great.
I mean we have this isn't justat CHOP, but in other pediatric
hospitals.
We have incredibleprofessionals called child life
(16:36):
specialists and at CHOP didgreat things.
They partnered with social worka lot and doing like sibling
supports to help offer a placefor siblings.
But back to challenges for thecaregivers.
Think about being a parenthaving to feel like you're
choosing between which child isgetting your attention.
(16:57):
I recall one situation wherethere was a family and a family
with a coupled parent, withcoupled parents, multiple
children and one of the siblingsof the patient won a tournament
or was going to a tournament.
That was out of state, but thepatient needed dialysis, and I
(17:21):
mentioned earlier that pediatricdialysis is not something you
can just find anywhere, so wehave to figure that out.
So that was something I wouldoften do, trying to coordinate
dialysis care for our patientsout of state, and where this
tournament for the sibling was,there was no pediatric dialysis
available, and so what ended uphappening was one of the parents
(17:42):
had to decide not to watchtheir other child at this
tournament.
Speaker 1 (17:48):
Yeah, I think Jennifer and I, we often see
those clients.
They are the sibling of someonewith, whether it be special
needs or chronic illness, andthere's no such thing as balance
when it comes to being afull-time caregiver.
Speaker 2 (18:06):
Yeah.
Speaker 1 (18:06):
So the 50-50 balance?
I mean it's hard to get that inany aspect of life, let alone
the bonding patterns or role asa caregiver and parent.
And sometimes, what would yousay, the children often get or
feel lost because of the triageor priority.
Speaker 2 (18:26):
Absolutely and also guilt because, a lot of siblings
are aware of why their sicksibling is getting all the
attention they're able tocognitively recognize or just
like logically recognize, likewell, of course my parents need
to help my sibling Look at howsick they are.
But they're going to naturallyfeel frustrated, maybe minimized
(18:46):
, maybe hurt, disappointed.
But then they feel guiltybecause they're like well,
shouldn't they be with my?
Speaker 1 (18:52):
sibling.
Speaker 2 (18:53):
Why am I feeling this way?
So yeah, I imagine that whenyou talk about your clients,
there are so many layers, somany complex.
Speaker 1 (19:02):
you know teasing apart desires, so many complex,
you know, teasing aparts and youkind of explained that internal
dialogue, trying to determinewhat is healthy, what's
empowering the guilt, like yousaid, and then becoming that
wise or healthy part of self nowwhere they're at now is going
to be a challenge inrelationships or in work.
It just transforms yeah.
Speaker 2 (19:21):
And it really is like a study in how to hold multiple
hard things at the same time,like where you're able to say,
yes, I understand that my parentcouldn't come to my tournament
because somebody needed to staywith my sibling to get them to
the treatments that was onlyavailable back home.
It's okay to hold that whilealso holding.
I'm really sad about that.
(19:42):
I'm really hurt about that.
I really wish that that was notthe case.
I imagine that's a lot of thework that you and Jen do, yeah.
Speaker 1 (19:48):
And when our daughter was our youngest was diagnosed
with a condition, a rarecondition.
One of the things that we askedthe doctors well, what are some
services?
That you can have for our otherchild.
You'll laugh at this there's.
Maybe you should start asupport group.
You'll laugh at this there's.
Maybe you should start asupport group.
Speaker 2 (20:13):
Give me 10, 20, 30 years, Right, let me, let me be
a, let me be a someone thatneeds help.
That sounds like so, like tonedeaf, um, like good intention.
Speaker 1 (20:17):
I'm sure Cause so many of the best luckily we
laughed about that in theelevator but like but I'm glad
to hear that chop that this is aspecialty with conditions and
illnesses that focuses on thatfamily dynamic and it's so
important for caregivers,whether it's a parent or whether
it's the other children, youname it that this affects the
(20:40):
family dynamics.
Speaker 2 (20:41):
It absolutely affects the family dynamics.
It can't be ignored.
Speaker 1 (20:44):
Yeah, I interned.
There was a program for myinternship and my master's
called the REM program, whichstands for rare and expensive
case management.
So it was a program wherewhatever the state of Maryland
considered rare and expensive soit was everything from cystic
fibrosis to spina bifida tothings that you know the average
person would never hear ordream about.
(21:06):
And it was very telling to meas a an intern and we would go
into the homes or where theywork to help with services and
the effect that it had onmarriages yes, because, because
the hat that the parent had tobe as primary breadwinner or the
(21:28):
worker or someone often tookthe lead as the caregiver and
that certainly can affect therole as husband and wife or
marriage, whatever that bondingpattern is.
So it was very telling to memuch earlier in my career.
Ooh, there's a lot at play here.
Speaker 2 (21:46):
So much at play.
I think it's so important.
You mentioned that role piece.
Speaker 1 (21:50):
So I think this is one thing that Caitlin and I are
mentioning, Whether it's foryourself as the caregiver,
whether it's for your childrenget support services.
Speaker 2 (21:59):
Absolutely, and talk to your medical team and
hopefully they won't say, hey,maybe you can start something.
Speaker 1 (22:07):
They wisely sent us to the case manager and social
worker.
Yes, that's what you want to do.
Speaker 2 (22:12):
You certainly want to ask your medical team if case
management or social workersavailable.
Look for services.
Speaker 1 (22:19):
Essential, but how many years at CHOP?
Speaker 2 (22:22):
I was at CHOP for about 10 years.
Speaker 1 (22:23):
That is a career in that field.
Speaker 2 (22:26):
It is a career.
Speaker 1 (22:28):
Thanks for helping so many.
Oh, that's sweet Thank you Tellus about the transition from
working there to your nextchapter.
Speaker 2 (22:38):
Yeah.
So, like I mentioned, about six, seven years ago, I started
working in private practicedoing psychotherapy and I was so
fortunate that I was able tostart off very slow, and so the
first few years I was onlyseeing a handful of clients and
(22:58):
I was slowly building up mycaseload and it was really just
such an incredible, incredibleexperience.
Then, come 2020, so many bigthings happened For the world,
for the entire world, butpersonally for me, there were a
lot of well, there were tworeally big losses that forced
(23:20):
that, really forced.
It forced me to take a closerlook at my career, my life, all
of that good stuff.
And in early 2021, I decided toleave my job at CHOP so
bringing to a close about 10years there, and I decided to
focus entirely on mypsychotherapy practice.
Speaker 1 (23:41):
Your family dynamics.
Did that play a role withleaving CHOP?
Speaker 2 (23:46):
Yeah, it absolutely did.
So long story short, cancer hasjust kind of helped itself to
our family.
Speaker 1 (23:59):
It weaseled its way in.
Speaker 2 (24:01):
Yeah, so like cancer really wheeled its way into my
family, as so many families havebeen affected, cancer really
has a way of doing that.
My mom was diagnosed for thethird time in 2016.
And unfortunately, she passedaway in January of 2020.
Speaker 1 (24:20):
Tell me more about your mom's cancer, if you don't
mind.
Speaker 2 (24:24):
Sure, yeah.
So my mom had breast cancerthree times.
She was first diagnosed in herearly 40s.
I was nine years old when shewas diagnosed the first time,
and then we suspect that itrecurred a second time when I
was in grad school and then shehad it a third time.
She was diagnosed for a thirdtime.
Again, we believe it was arecurrence and she was actually
(24:46):
doing really well for a longtime.
She was diagnosed in, I believe, 2016, 2017.
And then, in 2018, my fatherwas diagnosed with cancer.
Speaker 1 (25:02):
He was diagnosed with esophageal cancer and he had
elected to not pursue treatment.
Now, just because of I'm tryingto understand the timing and,
to me, the emotional powerhouseI must have on their children.
You, your mom, was diagnosedwith breast cancer for her third
time while you found out, yourdad.
Speaker 2 (25:20):
Mm-hmm.
Speaker 1 (25:21):
Ooh, okay.
Speaker 2 (25:22):
Yeah, and at the time we heard about dad, we mom was
getting treated.
At that point we knew that thecancer was never going to go
away from my mom, but we hadthought that it was something
that she was going to be able tomaintain with, with ongoing
treatment, chronic treatment andthen with my dad being
(25:45):
diagnosed with esophageal cancer.
For anybody who's had theexperience of esophageal cancer,
it's a pretty brutal treatmentregimen with not the best
outcomes, and so for my dad, hemade the decision that it was
not worth experiencing.
Speaker 1 (26:01):
And I imagine being a husband and at some points a
caretaker to his wife, your mom.
I wonder if that played a rolein the whole thing too.
Just with understanding.
Speaker 2 (26:16):
Absolutely, that's a lot, absolutely so by mid to
late 2018, you know the wholefamily it's myself, my sister,
my brother-in-law we were allaware that both my parents had
cancer dad terminally due to hislack of treatment, and then,
(26:36):
going into 2019, both of their,the quality of their health was
really declining.
Quality of their health wasreally declining and for a large
part of 2019, both my sisterand I were really tag teaming.
My parents were stillautonomous enough to like they
were living on their own.
Dad was taking mom to heroncology appointments, but it
(26:57):
was getting to the point whereit was getting to be too much.
And so I recall, like by mid2019, taking some time off of
work to help with things, um,going to appointments, mom ended
up having to go into rehab forum, um, well, mom ended up being
hospitalized a few times, thenneeded rehab to help recovery,
(27:20):
and dad, it was noticeablydeclining.
Speaker 1 (27:23):
Shall I say another version of a nightmare.
Speaker 2 (27:27):
It was absolutely a nightmare, and it was a tricky
part.
What was tricky about thatnightmare, though, is that you
don't really know it's anightmare as it's happening,
because you're in it.
Speaker 1 (27:37):
Yeah.
Speaker 2 (27:38):
And there were still so many periods of them being
autonomous that I don't think mysister and I I don't mean to
speak for my sister, but I don'tthink we realized how serious
it was.
I have to give so much creditto my sister because she was a
teacher in Delaware at the time.
She was able to come up for hugechunks of time during the
summer over breaks where shereally she really took the brunt
(28:02):
of it in terms of helping themout, and so it just kind of
continued to go that way untilmom got sick for the last time
and needed to be hospitalizedend of December of 2019.
And she passed away in thebeginning of January and I just
think back to that period,despite dad being so sick he
(28:27):
would actually drive down to thehospital every single day.
Mom, was in the hospital forabout a week before she passed
and dad would drive down.
It was a hospital, aspecialized hospital, that was
an hour and a half away.
Drive down every morning, spendthe day with her and then drive
back home at night.
Um, my sister, mybrother-in-law and I we, we
(28:51):
attempted so many times, wetried so hard to get him to let
us step in, you know, and he waslike no, I need to be there
with her again, despite himbeing so sick himself.
Speaker 1 (29:03):
And to me that's the difference between no, that's my
role as husband.
Speaker 2 (29:08):
Yeah.
Speaker 1 (29:09):
And the love of my life, yes, which is a very good
role to look finally at right.
Speaker 2 (29:15):
Yeah, no, I think it was really special and he was
very firm about us not seeingmom like that.
He's like your mom would notwant you to see her like this,
because unfortunately, mom wasjust not in her right mind.
She was very disoriented,unconscious a lot.
Speaker 1 (29:35):
Illness is an illness , right.
Speaker 2 (29:37):
Yep, it's an illness, yeah, and so after mom passed
away, I mean, anyone who's lostsomebody knows how disorienting
it is Like your world iscompletely.
Speaker 1 (29:54):
It's surreal.
Speaker 2 (29:54):
It's so surreal and I consider myself really, really
lucky that our family was superclose.
So my parents were friends.
They were the people I went towhen I was running into really
good things, really hard things.
I loved getting their advice onstuff.
Um.
(30:14):
So, to lose mom was just um,there was an implosion, there
was an absolute implosion, andthen COVID came two months later
and then everyone's worldimploded.
Everyone's world imploded.
Speaker 1 (30:34):
Dare I say the only grace is that you're not working
at a residential hospital atthis time.
Is there any like at thishorrible grief ridden just
emotion filled time?
At least you're not in a tryingto figure that out.
Speaker 2 (30:55):
Yeah, yeah, absolutely yeah.
But again I think, speaking forI think I can speak on behalf
of most healthcare workers whenI say that was also probably one
of the most surreal,disorienting times- how stress
(31:26):
or how chaotic or just gettingthrough the day-to-day routine,
like it's especially in a.
Speaker 1 (31:29):
You know it's yeah, it's bringing back memories.
Speaker 2 (31:30):
Yeah, yeah, it's absolutely awful.
It was.
It was absolutely awful, andI'm sure that is something that
you could do an entire podcaston, just in and of itself.
And so I'm working at thehospital.
I didn't have to go in toooften, but I was going in person
to assist on the COVID hotlinein Philadelphia and so I was no
longer able to see my dad,because my dad was obviously
(31:54):
very sick with cancer.
So, not wanting to add furthercomplication, I wasn't able to
see him.
Speaker 1 (32:01):
Starting two months after my mom died, I wasn't able
to see him, starting two monthsafter my mom died.
So you bring up anothersomething that jumps out at me
when the caregiver wants to care, give but whether it's the
hospital or the situation or thepandemic where the work or the
financial situation that thecaregiver does not have the
(32:22):
control, the ability to supportthe way they want to, and that's
a whole kind of processingtherapeutic and reason to go to
therapy right there in itself,especially when you're in the
middle of that phase or chapterof that caregiving.
Speaker 2 (32:38):
Yeah, absolutely, and I think you know I might.
Speaker 1 (32:41):
I, you know that makes me think of folks who
might live across the countryfrom their family, who might
need help, not being able toprovide care or be a support in
person going to appointments,and then another family member
is overseas, or whatever itmight be, that has their own
(33:03):
stress and frustration, or theone that's doing the caregiving,
and then there's a familymember that they feel that is
barking orders at them.
Yeah oh my gosh.
Speaker 2 (33:13):
So many dynamics.
It could be so many dynamics.
Speaker 1 (33:16):
Yeah.
Speaker 2 (33:17):
So many dynamics.
Speaker 1 (33:18):
So it's COVID.
Speaker 2 (33:20):
It's COVID, yeah.
So again, just to tie it up,dad went on hospice in the end
of 2020 and passed away inDecember of 2020.
And again, having to give somuch credit all the credit
really, to my sister and mybrother-in-law they actually,
the summer of 2020, decided tomove from Delaware up to
(33:41):
Pennsylvania, which is where mydad was living, and they moved
in with him and they were, youknow, boots to the ground
frontline all the way to the end.
And you know, you mentionedearlier that you know people who
want to be caregivers, butcan't necessarily I don't think
I necessarily conceptualize itas that, but can't necessarily.
(34:05):
I don't think I necessarilyconceptualize it as that.
I was certainly very aware ofthe privilege and the benefit of
knowing that my sister andbrother-in-law were with my dad,
but there was that sense well,I'm not there, how much should I
be there?
There was a questioning of Idon't want to get in the way of
maybe established, you know,just like the groove of what
(34:26):
they're doing.
But once he was on hospice, Ithink a lot of those concerns
just went completely out thewindow and I was able to go back
home to my dad's house for likedays at a time where I could
kind of alleviate a little bitwhat my sister and
brother-in-law were doing.
Speaker 1 (34:43):
And that's such a powerful reality-based thought
pattern Questioning, worrying,doubting.
Maybe it's a level of guilt andshame for some people.
Am I doing the right thing?
Am I not?
Do I personally feel that?
Do my person that I'mcaretaking for feel that?
Do my family memberspotentially feel that and those
(35:04):
are all things that I'll say isis normal for to come up for a
caregivers or family members,that that that happens?
Speaker 2 (35:14):
And there's no right way of doing this.
Right, I mean it's and this issomething, the more I'm I'm
working with caregivers reallyemphasizing like there's no
right way of doing this.
Not a cookie cutter thing forthis.
Not at all.
You weren't prepped for this.
Speaker 1 (35:54):
And utilizing support whether it's coaching, whether
it's friends, family therapy tohelp you explore and figure out
how showing up as a caregiverlooks for you.
Yeah, I often help peopleidentify a lot of forms of
therapy.
What is my healthier version ofthis?
Yeah forms of therapy.
What is my healthier version ofthis?
Yeah, yeah, and sometimesthere's a lot of context and
variables, that that can getmurky and muddy and we don't
always know what that is.
But helping people identifywhat is my healthy, next right
choice, what is my healthy thingthat I can do where I feel
(36:18):
relatively good with this beinghealthy, whether it's normal or
not, whether it's good, this ishealthy.
Is this healthy for me and theone I'm doing it for?
It's often a good parameter forpeople.
Speaker 2 (36:29):
Yes, I really like that.
Speaker 1 (36:31):
Yeah, it's a good one so how did this family
experience, grief, covid,pandemic, history of working
with infants and babies withchronic illnesses lead to where
you're at today?
Speaker 2 (36:49):
So both of my parents passed away in 2020.
And after navigating that um,both as a unspeakable, horrific
loss, but also as something thathad consumed so much of my time
, Professionally and personally.
Yeah, yeah, absolutely.
Speaker 1 (37:09):
So how did these personal experiences in addition
to your working with infantsand babies and adolescents with
chronic illnesses how did ittransition from grief and loss
and to where you're at today, tohelping people as a coach for
for those with chronic illnessesand helping caregivers and I
(37:34):
know you often work andspecialize with women
caregivers- After going throughthese experiences, After going
through these experiences, I'verealized that there is a
particular type of, dare I say,stress, pressure, disorientation
(37:55):
for folks who are caregivers intheir jobs.
So I would have consideredmyself as a caregiver, as a, a
social worker, sure,professional caregiver, a
professional caregiver, but nota professional codependent.
That's different.
Speaker 2 (38:15):
That's a joke, it's not real.
Go ahead as a professionalcaregiver.
I would use that term to definefolks who work in education,
who work in advocacy who work inservice.
Yeah, absolutely.
You do get used to a certainlevel of need and you get used
to showing up and trying toproblem solve that need you.
(38:35):
Your brain is wired to look forpotential problems, how to
solve those problems.
You exhaust your empathycapacity for the people you're
working with.
But then, when something bighappens at home, all of a sudden
you realize you're taking somany of these skills you use
(38:56):
professionally and now you'reusing those skills personally
with people that you haveestablished relationships with,
people you love, people who haveperhaps been your caregivers
through life, and it's reallydisorienting.
It's really disorienting.
So there's that disorientationpiece.
There is also, frankly, aburnout piece.
(39:19):
There's such burnout when we'retalking about caregivers.
They're already burnout.
We're already burnout ascaregivers.
Speaker 1 (39:35):
There's only so much energy that you can give people
and as as service orientedprofessional field, you
literally are giving a lot,whether it's whether it's
tangible, or time, or present,or emotion, or empathy or actual
physical actions.
It depletes you, oh my gosh.
Speaker 2 (39:50):
Like all of these systems again, whether we're
talking healthcare, education,service, advocacy, the systems
and the other people in thesystems just relentlessly demand
.
Speaker 1 (40:00):
Yeah.
Speaker 2 (40:01):
And we try to show up yeah, and oftentimes we don't
show up as well as we wish wecould, because we're burnt out,
we have nothing left.
Speaker 1 (40:09):
And we're talking about the pandemic how many
medical professionals died bysuicide?
Yes, yeah, I mean burnout.
Speaker 2 (40:21):
So these caregivers are now also looking at
providing care to someone theylove at home, whether it's for
me in my coaching business, Ifocus specifically on
professional caregiving women,and they're exhausted, they're
burnt out.
For me, I see so many uniquedynamics there that we don't
(40:44):
talk about, that aren'tnormalized, that aren't
supported.
Speaker 1 (40:49):
So let's do it.
Let's dive a little bit deeperinto that and tell us more about
the needs or services that youoften help when it comes to
these caretakers.
Speaker 2 (41:00):
So I think when we're talking about caregiving you
mentioned roles earlier Rolesare huge.
Roles are how we are defined orunderstand ourselves in
relationships.
If you're in a partnership andall of a sudden your partner
gets chronically or terminallyill, that partnership completely
shifts because it's not fully apartnership anymore.
(41:22):
There is an element ofimbalance where you are now the
person supporting the other andthat results in, I think, a lot
of identity questioning.
Big part of what I do is helpget curious with my clients
around identity, around thoseroles, around those
relationships, how they haveshown up in those relationships,
(41:43):
how they're now having to showup in those relationships, how
they want to be able to show upin those relationships.
Speaker 1 (41:51):
And often with a dramatic change and shift to
your point.
A lot of times in couples workI can help couples identify.
You know the whole balancething again.
Well, I'm only about 80% today.
Or I'm only at 30% today.
Well, I'm at 30% too.
Oh, good to acknowledge that.
But when it comes to caregiving, whether it's with illnesses or
(42:13):
whatever the condition might be, one of these partners may
never be at that 100% again andthat's a hard shift and a grief
period.
Speaker 2 (42:24):
And to grieve that and realize that and work
through that is oh, my goodness,it's so hard, and I think
that's like the first big thingto acknowledge.
This is hard and this isn't howit was supposed to be.
Speaker 1 (42:37):
Yes.
Speaker 2 (42:39):
It's just not how it was supposed to be, and it's
really awful that it is.
Speaker 1 (42:43):
And you can be angry and pissed.
Speaker 2 (42:46):
Oh my gosh, you should be angry and pissed.
Speaker 1 (42:50):
And that'd be okay, not filled with guilt and shame.
Speaker 2 (42:52):
No no no no, but it's good that you say that, because
that's probably one of thebigger struggles I see in my
clients.
The bigger struggles.
I see in my clients is theguilt and shame that comes with
how they feel now that thoseroles have shifted.
There's resentment, there'sfatigue, there's anger and
(43:16):
there's I mean I've had clientssay I hate this.
You know all of that is normal.
Speaker 1 (43:22):
Isn't that real?
Speaker 2 (43:23):
There's nothing wrong with that.
Speaker 1 (43:24):
Let's use the word healthy.
Speaker 2 (43:26):
It's healthy because, again, this isn't how it was
supposed to be.
That's a really big part ofjust validating.
Speaker 1 (43:33):
Yeah, and what we do with that anchor.
Speaker 2 (43:35):
Yes, yes.
Speaker 1 (43:37):
And grieve.
And where do we put that?
Anger is part of the process?
Speaker 2 (43:42):
Yeah, and that looks different with every client.
Speaker 1 (43:44):
Yep.
Speaker 2 (43:46):
With every person.
Another thing that comes up alot in my work with caregivers
is also figuring out how tostill take care of themselves.
Speaker 1 (43:56):
Oh good one and.
What I have time to focus onmyself.
I didn't do that when I hadespecially mothers right With
children.
Speaker 2 (44:06):
I didn't, you know, prioritize it, it's, it's it's a
huge one physician when Iworked with parents in that
(44:26):
position at CHOP.
There are so many uniquenuances to that and for that
reason I do not focus on them inmy coaching business because
that is so specialized in my, inmy very humble opinion.
I think that that's reallyparticular.
Speaker 1 (44:39):
You're very experienced in that world, thank
you.
Yeah, so I think parents whoare caregivers of children who
are chronically or terminallyill is a very particular type of
caregiving which I do not focuson.
Speaker 2 (44:55):
It's a whole other level of intensive, isn't it?
Speaker 1 (44:56):
It is yeah.
Speaker 2 (44:58):
It is, but I think that the notion of taking care
of oneself is already prettyforeign to most professional
caregivers, I'd go so far to sayfor most adults.
I think we struggle with that,at least in the society I know
which is really in America, andeven now, when we talk about
(45:22):
taking care of ourselves and oursociety, it's very consumer
driven, it's very commercialized.
We talk about self-care asbeing like get these products,
use these services, which is, Ithink, so problematic Quick fix.
Speaker 1 (45:39):
Yeah, how do I fill up my energy tank really quick?
Speaker 2 (45:41):
Yeah, which is just so not healthy.
So when I talk about this withmy clients, it's more about
First taking a look at how theyactually spend their time.
And I say this both as aprofessional and as someone who
has been in the caregiving rolethat, again, when you're in it,
you don't really realize thatyou are spreading yourself super
(46:07):
thin.
You're adrenaline fueled,you're racing around, you're
just trying to check things offa list, make sure things are in
place.
You don't realize you'reburning out even more than
you've been burned out.
And so, honestly, even justcoming to work with a therapist
or a coach is the first step inacknowledging that maybe there's
(46:30):
a better way of doing this,maybe there's a more intentional
way of doing this.
Speaker 1 (46:35):
It's the adaptation to what has to get done.
Speaker 2 (46:39):
Yeah.
Speaker 1 (46:40):
And then it's almost like the blinders for people as
caregivers.
And then it's our ability toadapt to um our lifestyle and I
always say everybody copes.
We're going to find a way tocope in a healthier and
unhealthy way, or survive or getthrough the daily life.
And we adapt and a large partof our audience understands the
(47:05):
addiction adaptation Caitlin'sdoing.
You're doing a wonderful job ofbringing the, the awareness and
the reality, at any level orseverity of caregiving, that in
some ways necessity canultimately shift into kind of
(47:28):
like cruise control where it canbe an adaptation of just like I
just gotta, I gotta go, I gottago, I gotta go, and then just
our energy tanker just goes andgoes.
Speaker 2 (47:39):
Yeah, and I mean the majority of caregivers and I can
certainly say all of my clientsare clearly doing it right Like
they're surviving, they'regetting it done, but they're
realizing this is not working.
Speaker 1 (47:54):
It's not sustainable.
Speaker 2 (47:55):
It's not.
Working Like this issustainable.
It's not sustainable.
And so, working with folks tofigure out well, what does
taking care of yourself, whatcould that look like while you
are also a caregiver?
Is there a way that we can holdboth of those things at the
same time?
And again, that looks differentfor every person, but I think
(48:17):
it's essential.
Speaker 1 (48:19):
Yeah, yeah, and I am very upset I've been almost 50
minutes in and Zal the co-host,our co-host, could not come to
Sweden with us.
I should put this at thebeginning of the episode.
You're going to have to redo theintro but what he's so huge one
as a a life coach and ameditation coach.
(48:40):
It doesn't have to be an hour,it can be five minutes of
sitting with yourself andconnecting to your body through
breath work or body work, andthe thing that he always hit me
with years ago, as my veryamerican self.
He just looked at me and hesays I find time to brush my
(49:01):
teeth every day.
Oh, he didn't mean it as a jab,but it was like, oh yes, I can,
literally, before I go to bed, Ican put down my phone and do
some inhale and exhale to slowmy mind and allow my body to
relax for that very moment whenI'm just so like running like a
chicken with my head chopped offbecause I am caregiving or
(49:21):
whatever it might be, and that'sjust something that can be so
valuable and I imagine you helppeople identify what that is for
them to yeah, in this process,yeah, I mean again, there's some
.
Speaker 2 (49:34):
There are so many differences depending on who the
person is, what the situationis, but I would say there's some
universal things that show up.
Like I mentioned, there's thepiece of trying to manage the
caregiver's own emotionalresponse to the situation,
(49:54):
trying to manage their grief,their sadness.
That's pretty universal.
Speaker 1 (50:00):
And I want to highlight that oh, what am I
actually feeling?
Speaker 2 (50:04):
Yeah.
Speaker 1 (50:05):
I'm a.
My role is caregiver and beingthere for them.
Can I allow myself to identifyand feel what I'm feeling, even
if it is anger or just fear,whatever it might be a good.
Speaker 2 (50:15):
I like that and feel what I'm feeling even if it is
anger or just fear, whatever itmight be Good.
I like that.
Yes, Give myself permissionAbsolutely.
Then there's also thelogistical piece.
Again, that's pretty universalwith my clients.
The question is like how do Ifit this all in one day?
How do I get all of myobligations at work done?
Speaker 1 (50:36):
How do I?
Speaker 2 (50:36):
show up for the person I'm caregiving, which
could probably include a lot ofthe same things that you're
doing at work, from phone callsto coordination to physical
showing up.
That's pretty universal, and sothose are like two of the big
areas that I focus on in my workwith my clients and trying to
(50:57):
figure out practical solutionsto both of those things, and it
could look like, as youmentioned earlier, like I'm
actually going to brush my teethand just notice brushing my
teeth and being practicing someembodiment there, practicing
some mindfulness.
It could also look like I'mgoing to make a list of the
(51:18):
healthier options at these fastfood restaurants that are near
my house, so I don't need toworry about cooking, I don't
need to worry about groceryshopping.
I just know I can grab this atChipotle and not feel awful.
It could be deciding to investsome money, which I recognize is
a privileged thing, butchoosing to funnel some money,
some income, into having someoneclean your house having, you
(51:40):
know, like outsourcing, I guess,is to get your time back, yeah.
Yeah.
Speaker 1 (51:46):
What about the people that may take the healthy part
of caregiving and compound itwith the codependency or the
lack of boundaries?
Or maybe they don't have tocare.
Give as much as they do.
Speaker 2 (52:04):
That's such a good question.
That's also something that's socommon and, I would say, also
really normal, because, again,we don't know how to do this.
Speaker 1 (52:16):
We're very much Turn that off, yeah.
Speaker 2 (52:19):
This is all on the job training, and I think most
of us and I speak personallyhere go into it with no
boundaries.
I think that's part of theadrenaline rush.
I think that's part of thethat's part of the adrenaline
rush.
I think that's part of theburnout, because for most of us
who have experienced burnout,who are chronically running high
(52:42):
with adrenaline cortisol,everything's a crisis,
everything's urgent, we'rereacting, we're not responding,
and so we're just showing uphowever we can and then thinking
about it later.
So I think that lack ofboundary is super normal.
That takes some work, that takessome intention.
Speaker 1 (53:04):
And I think the things that you mentioned, first
the what am I actually feeling,how do I prioritize?
Then there can be some mentalcapacity to identify how do I
set healthier boundaries with,whether it be family, whether it
be the person that I'mcaretaking or caregiving for,
whether it be work and that is,I think, a big thing for a lot
(53:28):
of, like you said, caregiversthat, oh, how do I do this in
the healthiest way possible?
Speaker 2 (53:33):
And there's something new every day for a lot of
people, yeah, and so I wishthere was some magical formula
that everyone could follow interms of setting those healthy
boundaries in general, but alsoin caregiving.
I don't know if there is one, Idon't know of one.
So that takes somecollaboration in my work with my
(53:54):
clients, and it's taking smallsteps.
It's asking little questionslike is this really your job?
Is this really yourresponsibility?
Do you have control over this?
Is there someone else who coulddo this?
Is there someone else whoshould be doing this?
Speaker 1 (54:10):
And I like all those questions and one of the things
that I often relate those thingsto for people that care give
some of my clients that might beabusing substances.
I work with family members it'sa lot of times and tell me if
you agree.
It's often fear-based yes right, it's the fear of.
I wish I remembered any ofthose questions that you just
(54:35):
said.
It's like is is this my job,right?
Is this a healthy priority?
Is this, yeah, is?
Is this in?
Speaker 2 (54:48):
my control?
Do I have control over this?
Is this my responsibility?
Do I have ownership over this?
Speaker 1 (54:55):
Why do I want?
Speaker 2 (54:55):
control over this, yeah, but I absolutely agree
with you.
I think it's fear-based, Ithink it's rooted in anxiety, I
think it's rooted in, justobviously, also desire for the
best for the other person.
And love and love and we thinkwe have control over it.
But yeah, I think it's reallyrooted in that fear and that
(55:15):
anxiety, and so it, when we talkabout setting boundaries, it's
it's trying to figure out howcan we be kind with ourselves,
be gentle with ourselves, andconfronting that fear and
anxiety, maybe poking aroundthere a little bit and figuring
out.
Well, okay, if I know thisabout myself, if I know that
this is my, my fear, and let'salso honor the fact that there's
(55:39):
some legitimate fear andanxiety going on here and that's
why we need to be really gentlewith ourselves, because,
especially when we're talkingabout chronic and terminal
illness, there's a lot oflegitimacy, absolutely.
Speaker 1 (55:54):
And I think you, as a coach, and support groups and
therapists, help us identifythat.
When we don't, I'll speak formyself.
Don't realize this is fear.
I don't realize this is anxiety.
I don't realize this is oh,I've got a reason to feel
depressed, right, yes, Like ofcourse, so of course.
(56:15):
I'm going to cope with, feeldepressed, right?
Yes, like of course.
So of course I'm going to copewith my fear, my anxiety, my
depression, the unknown, and Idon't always do it in the
healthiest ways.
So having a coach, having atherapist, having a support
group, can help with that.
So, clearly, we've talked abouta lot of what you do in your
profession and what you did atCHOP as a therapist, and we're
talking to you, the things thatyou provide your clients as a
(56:36):
coach.
When did that transitionactually happen for you?
From during COVID, I guess, andhaving your private practice,
and we're talking about some ofthe skills you give these
caregivers or family members,about your coaching practice.
Speaker 2 (56:52):
After I decided to leave my position at up top, I
focused full-time on my privatepractice as a therapist and that
practice has grown to focusprimarily on chronic illness,
where I work with lots of folksin therapy who have chronic or
terminal diagnoses, and alsocaregivers or other people
(57:12):
affected, because, as we weresaying earlier, many people are
affected with chronic illness,not just the patient, and in my
work I began to realize and gainfurther insight that there is
an element of caregiving thatdoesn't necessarily need the
clinical therapeutic supportthat I provide in a therapeutic
context as a therapist context.
(57:39):
As a therapist, there arepractical, solution-driven
approaches to caregiving thatcould be met subclinically, and
so I decided to expand mypractice to also include
coaching, and in my coachingpractice I focus exclusively on
professional women who arecaregivers professionally, who
are now caring for loved ones athome, and so that coaching
(58:00):
business has been evolvingslowly over the last two years.
Speaker 1 (58:05):
Yeah, that's really powerful work and I think the
coaching aspect that you bring.
This is such a phase of theirlives where energy is finite and
it sounds like your coachingpractice helps the
implementation at such a stagethat it's so important to to
(58:27):
apply and not just realize, butapply these things that you're
giving them.
Speaker 2 (58:34):
Yeah, and I appreciate that from a coaching
standpoint.
Again, we're not talking abouttherapeutic level intervention.
We're talking about reallygoal-based problem solving
intervention packaged.
Really, you know, it's not along-term investment in terms of
exploration, like therapy is.
Speaker 1 (58:55):
Talk more in your coaching practice just balancing
the caregiving responsibilitieswith personal wellbeing.
We've certainly been touchingupon this, but talk a little bit
more about that, because Ithink that's the crux for
everyone that can relate to this.
Speaker 2 (59:12):
In my coaching practice I really like to
partner with my clients ingetting clear on what they're
missing, where they realizethings aren't working.
I guess that's really thesimple way.
By the time clients are comingto me, they're coming to me
because they know somethingisn't working.
Speaker 1 (59:31):
One thing that we haven't mentioned yet is because
of your decade-long career inthe medical world with
caregiving and chronic illness,I think you really bring a
strength and a skill set thatmaybe some other coaches might
not have.
Where my mind goes, thechallenges with unresponsive or
(59:56):
inadequate medical support thatcan be so hard to navigate as a
caregiver, and whereas atherapist you might have to be I
don't know what word I'mlooking for but as a coach you
can really provide some skillsets to them in this world of
(01:00:17):
really stressful care when itcomes to the medical field for a
lot of people.
Touch on that a little bit.
Speaker 2 (01:00:22):
Yeah, absolutely.
I think when you're working ina coaching capacity or at least
when I'm working in a coachingcapacity I feel like there's a
lot more permission to actuallygive some advice.
Um, coming from my background,it's it's a bit more intuitive
for me to say, hey, have youexplored this?
Have you asked these questions?
Have you considered approachingit this way?
Have you asked about theseservices?
(01:00:45):
So that can be really useful.
I mean, I know that a lot ofthose things aren't necessarily
possible for many people, and sothen that's a different
discussion.
But yes, it's been very helpfulbeing able to pull from my
experience and using thatinsight to encourage
(01:01:06):
self-advocacy, asking questions,digging a little deeper and
accessing services.
Speaker 1 (01:01:12):
Yeah, and a lot of times in a caregiver role.
It often feels like reacting.
Speaker 2 (01:01:19):
Yes.
Speaker 1 (01:01:21):
And I think the example that you're giving is
being able to help peoplesometimes be proactive or feel a
little bit more grounded incertain medical situations and
hospital situations where peoplecan feel a little bit more
prepared for the unknown.
Speaker 2 (01:01:39):
Absolutely, and I frequently distinguish between
being reactive versus beingresponsive.
And again we're talking aboutpeople who are really charged,
really burnout.
Speaker 1 (01:01:50):
Stressed, fearful.
Speaker 2 (01:01:51):
Super stressed, fearful.
So reactivity is the default,and so figuring out how can we
shift from being reactive tobeing responsive and being
giving ourselves permission,even if it's just a few extra
seconds, of taking some deepbreaths before we choose our
response to something, can be soempowering, and it can be a way
(01:02:14):
of accessing our agency.
It can be a way of remindingourselves like we do have some
semblance of control, even ifit's a small little bit.
Speaker 1 (01:02:24):
I mean ideally as the caretaker or caregiver we want
to come from, this wise part ofself.
Yeah, that's a good place tocome from.
Speaker 2 (01:02:33):
Yeah.
Speaker 1 (01:02:34):
Well, thanks so much, Caitlin, for joining us today
in Sweden.
Speaker 2 (01:02:38):
Well, Luke, thank you so much for having me.
Speaker 1 (01:02:41):
This was great.
Is there anything else that youwant to say as we wrap up this
episode?
Speaker 2 (01:02:48):
I would certainly encourage your listeners to give
themselves permission to askthemselves if it's possible to
do things differently, if it'spossible to be more kind to
themselves through this process,if there are people or
resources, whether informal orformal, that they can access to
(01:03:12):
help them navigate this so theydon't feel alone while they're
doing it, that sense ofisolation.
So that would be my last littlebit of advice.
Speaker 1 (01:03:23):
Yeah, you're not alone in this process and,
clarity's sake, caitlin comesfrom Paris via Pennsylvania.
Yes, through her coachingpractice, even though she spends
most of her time in Paris, shehas the ability to work with any
of you worldwide.
Speaker 2 (01:03:41):
That is very true, I do.
Speaker 1 (01:03:43):
So I'll put her information in the episode notes
and in closing.
Caitlin Dwyer illuminated thelandscape of chronic illness and
caregiving with herknowledgeable insights and
personal experiences.
Through our discussion, we'veexplored the emotional and
practical challenges faced bycaregivers in those navigating
chronic illness, shedding lighton the universal truths of
(01:04:04):
healthy change, resilience,compassion and the human spirit.
As we wrap up this episode,remember that you don't have to
navigate these challenges alone.
Support groups, resources,professionals like Caitlin or
even working with Coach Caitlinare available to provide
guidance and understanding alongthe way.
(01:04:24):
Whether you're seekingconnection, practical advice or
simply a listening ear, knowthat help is within reach.
Reflect on the lessons learnedand stories shared and, if you
resonate with our conversation,consider sharing this episode
with others who may benefit fromthis wisdom.
Your support helps us continueto amplify important
conversations and provide viableresources to our audience.
(01:04:45):
If you haven't yet and chanceyou haven't give us a rating on
the platform you listen to andreview, if able, it helps us
reach more potential listeners.
Together, let's foster acommunity of understanding and
support where no one has to feelalone in their journey.
Thank you for joining us onthis journey of exploration and
(01:05:05):
discovery.
Until next time, take care andbe well, thanks, thank you.
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